Living independently with Osteogenesis Imperfecta (OI) , a series of videos. Here's the intro and another one about cooking
You can find more videos in the series here.
3.27.2011
Presence:some thoughts
I've been thinking about presence lately.
The presence of friends for one thing. I share joys and sorrows with friends and it seems almost every day someone shares theirs with me. It can be healing or challenging, but never boring.
Then there is the Presence of God, a very real 24/7 relationship for me. Prayer, service and other spiritual practices make this relationship grow but God does most of it.
Presence is something we give as well as receive. It can be a gift or not. When we empathize with others and practice tolerance, our presence can be healing. When we are sarcastic or act out of selfish needs, our presence can be hurtful. It may allow someone else to practice their tolerance, but that's the best that can be said of it.
How we are present isn't something we can avoid, unless we set out to be a modern day hermit. But even those emerge from their caves at some point. They choose to smile or snarl.
For some people presence means presents. Sadly, they equate love to material giving or receiving. But those kinds of presents are not the gift most needed when people face tough times. I'm not talking about using this approach to fail to meet someone's basic needs of food and shelter, but when material gifts are given instead of time and attention, it leads to emotional poverty .
We don't have to know folks very well to be present. Its by being present that we get to know them.
Being present takes time. It may be inconvenient or feel uncomfortable. It can be joyful, ,merciful , spiritually refreshing, or make us feel helpless. But our feelings aren't always a clear reflection of what our presence means to someone else. It is when someone is ill or frightened that he or she needs our presence. We may feel as if we don't know what to say, but we can choose to be present. We may not have advice or counsel and that may feel uncomfortable for us but be a blessed relief for them from unwanted advice.
Being present takes maturity. It can feel exhausting until we understand that there is nothing more fulfilling than really giving of ourselves.
It's by being present to others that we get to know ourselves,that we learn to be present to ourselves.
This is why being truly present is the greatest gift we can give to those who love us.
The presence of friends for one thing. I share joys and sorrows with friends and it seems almost every day someone shares theirs with me. It can be healing or challenging, but never boring.
Then there is the Presence of God, a very real 24/7 relationship for me. Prayer, service and other spiritual practices make this relationship grow but God does most of it.
Presence is something we give as well as receive. It can be a gift or not. When we empathize with others and practice tolerance, our presence can be healing. When we are sarcastic or act out of selfish needs, our presence can be hurtful. It may allow someone else to practice their tolerance, but that's the best that can be said of it.
How we are present isn't something we can avoid, unless we set out to be a modern day hermit. But even those emerge from their caves at some point. They choose to smile or snarl.
For some people presence means presents. Sadly, they equate love to material giving or receiving. But those kinds of presents are not the gift most needed when people face tough times. I'm not talking about using this approach to fail to meet someone's basic needs of food and shelter, but when material gifts are given instead of time and attention, it leads to emotional poverty .
We don't have to know folks very well to be present. Its by being present that we get to know them.
Being present takes time. It may be inconvenient or feel uncomfortable. It can be joyful, ,merciful , spiritually refreshing, or make us feel helpless. But our feelings aren't always a clear reflection of what our presence means to someone else. It is when someone is ill or frightened that he or she needs our presence. We may feel as if we don't know what to say, but we can choose to be present. We may not have advice or counsel and that may feel uncomfortable for us but be a blessed relief for them from unwanted advice.
Being present takes maturity. It can feel exhausting until we understand that there is nothing more fulfilling than really giving of ourselves.
It's by being present to others that we get to know ourselves,that we learn to be present to ourselves.
This is why being truly present is the greatest gift we can give to those who love us.
3.25.2011
This Little Thumb of Mine
My Left Thumb is feeling slightly better this morning. I've been letting it hang out and chill which means I'm using my right thumb for everything, except transferring. I'm still transferring onto my left side simply because of how furniture, etc. Is set out. I just have to be careful that I don't land the wrong way.This makes transfers more difficult.
Yesterday while trying to avoid landing on the injured part of my hand, I missed the wheelchair and wound up on the floor. That' s not the bad part because actually you dont fall that far from a wheelchair. I learned that while playing wheelchair sports. The rough part was getting off the floor with an injury.
My cat Buddy used to come over when this would happen and check out the situation, as if he had a clipboard and was taking measurements.
"Okay if you move over a foot there, you should be able to hoist yourself up on the recliner..."
If I fell out of the manual wheelchair, Buddy would sometimes even push it toward me although he was no Lassie. He would take his time about it. Push. Stretch Push. Nap.
Riley, however, is still a kitten. Kittens just cry when things like this happen. Maybe it's out of sympathy, but I don't think so. I think he was crying because it meant a delay for suppertime.
After scoping out the situation, I figured out a way to get off the floor. Riley cried the whole time which felt rather cathartic and lent a sense of urgency to the situation. I made up this song
This little thumb of mine
I'm gonna let it hang
This little thumb of mine
Wish I could use it. Dang
This little thumb of mine
Better heal up soon
Or Riley will
Need to use a spoon
Which seemed to calm the kitten down because it just doesn't matter what you say to a kitten. It's all about your tone of voice.
And his supper.
Yesterday while trying to avoid landing on the injured part of my hand, I missed the wheelchair and wound up on the floor. That' s not the bad part because actually you dont fall that far from a wheelchair. I learned that while playing wheelchair sports. The rough part was getting off the floor with an injury.
My cat Buddy used to come over when this would happen and check out the situation, as if he had a clipboard and was taking measurements.
"Okay if you move over a foot there, you should be able to hoist yourself up on the recliner..."
If I fell out of the manual wheelchair, Buddy would sometimes even push it toward me although he was no Lassie. He would take his time about it. Push. Stretch Push. Nap.
Riley, however, is still a kitten. Kittens just cry when things like this happen. Maybe it's out of sympathy, but I don't think so. I think he was crying because it meant a delay for suppertime.
After scoping out the situation, I figured out a way to get off the floor. Riley cried the whole time which felt rather cathartic and lent a sense of urgency to the situation. I made up this song
This little thumb of mine
I'm gonna let it hang
This little thumb of mine
Wish I could use it. Dang
This little thumb of mine
Better heal up soon
Or Riley will
Need to use a spoon
Which seemed to calm the kitten down because it just doesn't matter what you say to a kitten. It's all about your tone of voice.
And his supper.
3.23.2011
My. Left Thumb
In a Transfer Gone Wrong, I injured My Left Thumb last night. As I was moving from my wheelchair into bed, I landed on my hand and sprained my thumb.
I didn't think this would be a big deal because I don't have sensation. But pain does register as spasms. So now whenever I transfer or unwittingly hit something with My Left Thumb I have spasms.
I recall injuring my hands when I played wheelchair tennis. I taped a racket on to play and sometimes a finger would escape and get banged around without me realizing it until I looked down and saw blood.
Wow, I'd think. That should hurt.
And I was so into playing tennis that if it started spasming I would try to figure out a way to use the spasm so I could angle the ball better. This kind of thing grossed out some of the medical students who were watching our matches. They clearly weren't into tennis enough.
So what I'm doing with My Left Thumb is to situate it in a glove so the spasms turn a few pages.
Why not? This opportunity won't last forever.
What the new ADA regulations mean to you this spring via NCPAD
A great article with useful contact information in case you have questions about the new ADA regulations
http://blog.ncpad.org/2011/03/22/what-the-new-ada-regulations-mean-to-you-this-spring/
http://blog.ncpad.org/2011/03/22/what-the-new-ada-regulations-mean-to-you-this-spring/
3.22.2011
Guest post by Paul Mugambi, African disability advocate
I was contacted by Paul, a few weeks ago. He is a disability advocate in Africa as well as a wheelchair basketball player. (He is looking for sponsorship and opportunities to travel and play. If anyone can help, please contact him at his email below. )
His writings reflect his thoughts from the work he does as well as a deep commitment toward working for a better future for those with disabilities.
*
MY SPACE:
You just want to live your life, like everyone else. But at some point in your young life--probably at the time of diagnosis—and said that you have a disability everything changed and people have treated you differently ever since.
• Most people pay attention to what you cannot do. Especially professionals who think that the person with a disability can not make the best choice thus concentrating on the inabilities instead of building up on the abilities. Few make the effort to see what you can do. And some of what you can do looks different as compared to others, so it's still "wrong" or doesn't count.
I wonder what’s there in a blind person pursuing his or her interests! Throughout your life, you've been surrounded by people trying to "help" you: trying to get you to do things you cannot do--"normal" things--that must be important to them. For instance an employer giving you a paper and a pen and you cant see. Your feelings about these things, and your other wants, needs, hopes, and dreams, don't seem to matter much to anyone else. And for as long as you can remember, people have "placed" you in special settings, surrounded by others who also cannot do "normal" things.
• You're not allowed to have experiences like other people; your parents, teachers, service providers, etc. think you're not ready, not able, not competent. You're also not expected to do what others do, like learning the three Rs, being responsible for yourself, living on your own, having a real job, and more. They also work hard to protect you. So you learn not to expect too much out of life; you learn not to do too much; you learn not to try, because it doesn't make any difference; you learn to be helpless.
• You've never really had friends--not really, not like other people do--no one to call when you're lonely or when you want to share a secret. You'd like to fall in love and kiss and more, but that will probably never happen. You'd like to have the freedom to do what you want, when you want, how you want, and the freedom to say NO--but that seldom happens. There are so many things you want to do, so many places you want to go, so many people you'd like to know, and so much you want to feel--and you've wanted these things for days, and weeks, and months, and years. You've waited and waited and waited; it's so hard to keep waiting. You really feel angry and you also feel sad. When will we unlock the chains we have put to lives of persons with disabilities? This confirms the status of many persons with disabilities in Kenya and developing countries.
• I believe all persons with and with out disabilities were born free is us who have excluded through the barriers that exist: attitude, environment and institutional. When shall I walk free and people stop staring and claiming am a sick person? Some even gossip next to me thinking I can not hear!
• Sometimes one don't feel very important; you don't feel needed; and you haven't accomplished much in your life--but then no one expects these from you, so maybe you shouldn't expect these things for yourself.
• All the different people in your life exert a great deal of control over you, and they probably all have good intentions, but...
The above description may not apply to all people with disabilities, but it applies to far too many--even one would be too many. We can do better! And it begins with empathy: working to understand another's feelings, experiences, and more. This can be enhanced by unlocking the jail terms established for persons with disabilities. This will guarantee exclusive rights and privileges.
Paul M. Mugambi.
shamgpaul@gmail.com
His writings reflect his thoughts from the work he does as well as a deep commitment toward working for a better future for those with disabilities.
*
MY SPACE:
You just want to live your life, like everyone else. But at some point in your young life--probably at the time of diagnosis—and said that you have a disability everything changed and people have treated you differently ever since.
• Most people pay attention to what you cannot do. Especially professionals who think that the person with a disability can not make the best choice thus concentrating on the inabilities instead of building up on the abilities. Few make the effort to see what you can do. And some of what you can do looks different as compared to others, so it's still "wrong" or doesn't count.
I wonder what’s there in a blind person pursuing his or her interests! Throughout your life, you've been surrounded by people trying to "help" you: trying to get you to do things you cannot do--"normal" things--that must be important to them. For instance an employer giving you a paper and a pen and you cant see. Your feelings about these things, and your other wants, needs, hopes, and dreams, don't seem to matter much to anyone else. And for as long as you can remember, people have "placed" you in special settings, surrounded by others who also cannot do "normal" things.
• You're not allowed to have experiences like other people; your parents, teachers, service providers, etc. think you're not ready, not able, not competent. You're also not expected to do what others do, like learning the three Rs, being responsible for yourself, living on your own, having a real job, and more. They also work hard to protect you. So you learn not to expect too much out of life; you learn not to do too much; you learn not to try, because it doesn't make any difference; you learn to be helpless.
• You've never really had friends--not really, not like other people do--no one to call when you're lonely or when you want to share a secret. You'd like to fall in love and kiss and more, but that will probably never happen. You'd like to have the freedom to do what you want, when you want, how you want, and the freedom to say NO--but that seldom happens. There are so many things you want to do, so many places you want to go, so many people you'd like to know, and so much you want to feel--and you've wanted these things for days, and weeks, and months, and years. You've waited and waited and waited; it's so hard to keep waiting. You really feel angry and you also feel sad. When will we unlock the chains we have put to lives of persons with disabilities? This confirms the status of many persons with disabilities in Kenya and developing countries.
• I believe all persons with and with out disabilities were born free is us who have excluded through the barriers that exist: attitude, environment and institutional. When shall I walk free and people stop staring and claiming am a sick person? Some even gossip next to me thinking I can not hear!
• Sometimes one don't feel very important; you don't feel needed; and you haven't accomplished much in your life--but then no one expects these from you, so maybe you shouldn't expect these things for yourself.
• All the different people in your life exert a great deal of control over you, and they probably all have good intentions, but...
The above description may not apply to all people with disabilities, but it applies to far too many--even one would be too many. We can do better! And it begins with empathy: working to understand another's feelings, experiences, and more. This can be enhanced by unlocking the jail terms established for persons with disabilities. This will guarantee exclusive rights and privileges.
Paul M. Mugambi.
shamgpaul@gmail.com
3.21.2011
Platitudes and Attitudes
I was laying in bed last night comforting my kitten Riley when this idea for a blog post occurred to me.
Riley was abandoned outside at about five to six months old when his owners moved. We sleep with a light on because he's afraid of the dark. And when it's dark and it rains he quivers in fear from the sound of the rain. When he gets that scared I sit up with him and talk to him until he calms down.
Of course I could just tell him to buck up or that he should be grateful he has a new home. I could toss platitudes at him. But that's not going to reach him when he's that frightened and upset.
Sometimes I also sit with people who have problems so big they're afraid too. Their age doesn't matter. Some have worn out the patience of friends who start throwing platitudes at them because they assume it's an attitude issue.
If you only did this, their friends might say, or if you reframe it...or perhaps being good Christians they might toss some bible verses out there. I guess they never read Job because thats exactly what his buddies did. And they threw in some good rationalizations as to why it happened to Job too. He must have sinned. He must have displeased God.
Sometimes they say their friends are angry at them and often they walk away, abandoning them when things are at their worst. You've changed they say or you won't change and sadly the person is often blamed for a problem not even of his or her own making.
I believe, as Quakers say, that there is that of God in all of us. I also believe it is up to us to serve others, to be the hand of God, the face of God, the voice that reassures and calms others in dire need.
Although there are times we all need an attitude adjustment, when folks are facing huge overwhelming financial, health or personal issues, they need a listening nonjudgmental ear, not platitudes or attitudes thrown at them.
Riley was abandoned outside at about five to six months old when his owners moved. We sleep with a light on because he's afraid of the dark. And when it's dark and it rains he quivers in fear from the sound of the rain. When he gets that scared I sit up with him and talk to him until he calms down.
Of course I could just tell him to buck up or that he should be grateful he has a new home. I could toss platitudes at him. But that's not going to reach him when he's that frightened and upset.
Sometimes I also sit with people who have problems so big they're afraid too. Their age doesn't matter. Some have worn out the patience of friends who start throwing platitudes at them because they assume it's an attitude issue.
If you only did this, their friends might say, or if you reframe it...or perhaps being good Christians they might toss some bible verses out there. I guess they never read Job because thats exactly what his buddies did. And they threw in some good rationalizations as to why it happened to Job too. He must have sinned. He must have displeased God.
Sometimes they say their friends are angry at them and often they walk away, abandoning them when things are at their worst. You've changed they say or you won't change and sadly the person is often blamed for a problem not even of his or her own making.
I believe, as Quakers say, that there is that of God in all of us. I also believe it is up to us to serve others, to be the hand of God, the face of God, the voice that reassures and calms others in dire need.
Although there are times we all need an attitude adjustment, when folks are facing huge overwhelming financial, health or personal issues, they need a listening nonjudgmental ear, not platitudes or attitudes thrown at them.
3.19.2011
Sometimes you gotta be there
I tell my friends about what it's like to go to places and have to leave because there's no accessible parking available. They listen intently but sometimes it isn't until they go somewhere with me and actually experience seeing an illegal parker that they get how frustrating it is to see cars without proper tags taking up the spots. It can mean missed appointments and changed plans. Because of it's frequency I sometimes have to bring an extra driver along who can let me out and park the van. It often seems as if these laws aren't being enforced at all.
So this article about a paraplegic guy who had his gym membership revoked after he confronted a non disabled member about illegally parking struck home.
http://t.co/GjMbxZS
So this article about a paraplegic guy who had his gym membership revoked after he confronted a non disabled member about illegally parking struck home.
http://t.co/GjMbxZS
3.18.2011
Soft landings
Things are much more comfortable around here now that i have my cushion, especially the landings when I transfer.
Speaking of making things easier I was reading my United Spinal Action magazine and found out about Erikas List, a resource for the SCI community. Erika Bogan is aiming to provide an online resource for accessibility information and a Craigslist type listing. In her spare time she's a mom and surfs. Kudos to her for making things easier for other folks.
Her free site is at www.erikaslist.org
You can send her links to resources at Erika@erikaslist.org with the following info:
Company name, a fifty word description and the website link.
Speaking of making things easier I was reading my United Spinal Action magazine and found out about Erikas List, a resource for the SCI community. Erika Bogan is aiming to provide an online resource for accessibility information and a Craigslist type listing. In her spare time she's a mom and surfs. Kudos to her for making things easier for other folks.
Her free site is at www.erikaslist.org
You can send her links to resources at Erika@erikaslist.org with the following info:
Company name, a fifty word description and the website link.
3.17.2011
An Irish blessing on St Patricks Day
May joy and peace surround you,
Contentment latch your door,
And happiness be with you now
And bless you evermore.
Happy St Patricks Day everyone!
Contentment latch your door,
And happiness be with you now
And bless you evermore.
Happy St Patricks Day everyone!
3.16.2011
The cushion is coming! The cushion is coming!
It's out for delivery according to UPS.
It's been 11 days since my air cushion went POOF.
During that time I've had delivered, either as gifts or purchases,
A flash light. Took two days to get here
A tire inflator. Took one day to get here
Clothing Took two days to get here
A mug. Took three days to get here
Yet, for some inexplicable reason, a medical item that is not customized, has a two to three day shipping period imposed on it that applies, according to the seller, prior to UPS being sent the item. At that point the accepted procedure is to ship it via a method that doesn't include weekends and takes three to five additional business days.This was not explained to me when I ordered the item even when I specifically asked when it would arrive. I asked about expedited shipping and for this 2.5 pound item was told that would cost as much as the item. I was not told the item was coming from Mexico either.
So the question becomes why isn't the amount of time they have to ship these items regulated? It seems to me incongruous that a medical necessity takes so much longer than other items. And why isn't a less expensive expedited shipment method available especially for an item that weighs so little? All the items listed above could have been expedited for much less.
Its time to start questioning things. Like accepting that if a company has the word medical in it's name it gets to set it's own rules. Why don't we have other options? We need to keep asking for them and letting folks know there's a market for better service for people with disabilities.
3.15.2011
Where's the cushion Waldo?
I just checked and it appears the cushion may still be in San Diego. Despite specifically asking for access to updates, that's the only information I've been able to get.
I've been trying to look on the bright side of all this, keeping in mind the plucky movie characters with disabilities everyone so loves. So here's a list of positives:
1. Sitting on a surface with Velcro bands keeps me securely in the wheelchair over bumps.
2 it's given me an idea for a product for those who go cushion-less: pants with Velcro bands to match the sling. Maybe call them Stuck on You.
3 Velcro is noisy when you need to get out of the chair but it provides a great conversation starter. What's that sucking noise under your butt? really leads to great one line answers.
4. Sitting lower in the chair brings me closer to my kitten. And the bugs on the ground too.
5. Checking more frequently for pressure sores may sound unpleasant at first but there must be a positive in there if I just try hard enough.
So there you have it. If I conjure up Heidi or Pollyanna hard enough or tell myself that after all I'm not being asked to climb a mountain or ford a stream (which makes me break into song which may or may not be a positive) I can convince myself for a few moments that asking a company that sells a medically necessary item to be accountable for when it arrives is unreasonable and petty of me and gee whiz I need to overcome that.
In the meantime Waldo is looking for the cushion.
Update: I just received two identical emails dated March 11 indicating that the cushion was sent from San Diego and estimated delivery is tomorrow. I rechecked the UPS site which i checked prior to writing this post and about a half hour after I posted this, that was updated to show the cushion has arrived in NJ. The two emails did not appear in my email box until after I posted this. Certainly appreciate any information.
3.14.2011
Moline Post Office with Mitchell Swanson (captioned)
I sometimes have people ask me what's the big deal about having a door that's too heavy at a business establishment or other building. This video shows how much of an issue it is for some of us with disabilities.
h/t to @patrickhughesjr
h/t to @patrickhughesjr
Day whatever without cushion
I've lost count. The cushion is in San Diego apparently where it's been since Friday. Customer service did nothing to expedite it and keeps telling me it was sent March 9 to UPS although all the paperwork I've seen says UPS received it very late on March 10.
Totally count on the cushion my friend sent over the weekend getting here first.
3.12.2011
Millie with her new wheelchair
I love to see kids enjoying the freedom wheelchairs give them! Millie in her garden :)
3.11.2011
Day 6 without a cushion
After spending hours of my time calling and writing to folks, my wheelchair cushion has been sent to UPS with an estimated delivery date by the end of the day on March 16.
Meanwhile a friend is mailing me her backup cushion via priority mail. It will be here by Monday. (Thanks Frida. ) Just in case there are any other delays.
Who knew wheelchair cushions could just be put into packages and mailed like that?
Meanwhile a friend is mailing me her backup cushion via priority mail. It will be here by Monday. (Thanks Frida. ) Just in case there are any other delays.
Who knew wheelchair cushions could just be put into packages and mailed like that?
3.10.2011
Day Five without Cushion
So I just called to see where my wheelchair cushion is.
The good news is that I was told it was shipped on March 9, although their web site indicates it still hasn't shipped. Nor do I have a tracking number yet.
The bad news is that I wasn't told the cushion is coming from Tijuana Mexico which means it will take UPS even more days to deliver.
Bottom (and I mean bottom) line is I can expect it at the earliest by March 16 or 17. I was led to believe I would have it at the latest tomorrow or Monday. Of course I asked when to expect this item since I have no cushion to sit on.
I said I would have ordered it elsewhere had I known the time frame.
They apologized.
I still have no cushion to sit on. I can try calling UPS once I get a tracking number. They are tremendously helpful in speeding up medical items.
UPDATE: Got the tracking number. UPS hasn't even received the item yet. A label was made up today. I called back to find out why I was told it was shipped on March 9 and was told they relied on manufacturer's website. I asked to see that information or have access to it. I was told it was being sent. Instead I was emailed a copy of the UPS tracking page indicating that UPS hasn't received the item.
All of this took numerous calls and large chunks of my time today, just to find out what's going on.
The good news is that I was told it was shipped on March 9, although their web site indicates it still hasn't shipped. Nor do I have a tracking number yet.
The bad news is that I wasn't told the cushion is coming from Tijuana Mexico which means it will take UPS even more days to deliver.
Bottom (and I mean bottom) line is I can expect it at the earliest by March 16 or 17. I was led to believe I would have it at the latest tomorrow or Monday. Of course I asked when to expect this item since I have no cushion to sit on.
I said I would have ordered it elsewhere had I known the time frame.
They apologized.
I still have no cushion to sit on. I can try calling UPS once I get a tracking number. They are tremendously helpful in speeding up medical items.
UPDATE: Got the tracking number. UPS hasn't even received the item yet. A label was made up today. I called back to find out why I was told it was shipped on March 9 and was told they relied on manufacturer's website. I asked to see that information or have access to it. I was told it was being sent. Instead I was emailed a copy of the UPS tracking page indicating that UPS hasn't received the item.
All of this took numerous calls and large chunks of my time today, just to find out what's going on.
Paraplegic Parking video
..or why to carry a reacher in your car...something I learned long ago...
[visual description: Paraplegic male driver is shown entering SUV, taking wheels off of chair and putting chair into car. He then backs out of parking structure. In the next scene he pulls into an accessible parking spot, begins to take chair out of car, puts a wheel on and the chair falls beyond his reach. He attempts to reach it with the extra wheel, which he drops and it rolls away. He becomes upset for a few moments and then a male passenger in the back seat asks if he wants help. Paraplegic male is then shown seated on ground and shows how he carries a reacher to avoid this.]
3.09.2011
Day Four
Just checked. Cushion not shipped yet. No weekend delivery available on this item.
I can order almost any other item overnight. Silly things like candy and DVDs.
But a standard sized wheelchair cushion that is in a package on a shelf somewhere, no way.
3.08.2011
Wheelchair parts on the lam
The cushion is ordered and will be here in a week. I was told expediting it would cost as much as the item. Funny since it's made of foam which might even float. But part of the delay appears to be getting the medical manufacturer involved. I was told that yes shipping can be expedited but still there will be a number of days of delay anyhow.
Notice the word medical. That always seems to ensure things will be slowed down even though this item isn't custom made but is in a standard size. I forget my wheelchair is a medical item probably because our medical system never pays for it or parts or repairs or accessories. I do. And dearly because those prices assume insurers will pay.
Meanwhile I'm sitting on the sling of the wheelchair which has Velcro. Transferring off and on causes a sucking sound and Riley keeps jumping up to help when I get stuck. I'm also lower in the chair so reaching everything is different. But all in all this doesn't rack up there with having wheelchair things happen like broken casters, which makes the chair unusable.
I once was stuck between a medical supply company and a dealer who took six weeks to fix a simple part on a wheelchair.
Time moves slowly when it comes to wheelchair parts.
I'm tired of hearing about Medicare fraud by folks who could care less about how their actions raise prices for the rest of us and make it look to society as if disabled people are in on that. So many of the people I know pay themselves for wheelchairs and parts.
Wheelchair parts on the lam, for sure.
Notice the word medical. That always seems to ensure things will be slowed down even though this item isn't custom made but is in a standard size. I forget my wheelchair is a medical item probably because our medical system never pays for it or parts or repairs or accessories. I do. And dearly because those prices assume insurers will pay.
Meanwhile I'm sitting on the sling of the wheelchair which has Velcro. Transferring off and on causes a sucking sound and Riley keeps jumping up to help when I get stuck. I'm also lower in the chair so reaching everything is different. But all in all this doesn't rack up there with having wheelchair things happen like broken casters, which makes the chair unusable.
I once was stuck between a medical supply company and a dealer who took six weeks to fix a simple part on a wheelchair.
Time moves slowly when it comes to wheelchair parts.
I'm tired of hearing about Medicare fraud by folks who could care less about how their actions raise prices for the rest of us and make it look to society as if disabled people are in on that. So many of the people I know pay themselves for wheelchairs and parts.
Wheelchair parts on the lam, for sure.
3.07.2011
Backup supplies
My wheelchair air cushion finally died yesterday. I used to always have backup cushions around when I played tennis but now I don't. And I know I should have backup but things are pricey these days.
So my sister and I rigged up a cushion of sorts from what was here, mainly foam pieces from Walmart but I'm having spasms and pain. It's going to be a long week.
Unfortunately wheelchair cushions take time to order. They are expensive so I have to shop around and figure out the least expensive alternative.
Like many others, I wish we had a better system to get at wheelchair supplies and items. When this kind of thing happens it brings home how much harder it is to buy them. First there's sticker shock and then site after site wanted thirty dollars more to get it here quicker than their usual three to five business day period.
Ouch.
So my sister and I rigged up a cushion of sorts from what was here, mainly foam pieces from Walmart but I'm having spasms and pain. It's going to be a long week.
Unfortunately wheelchair cushions take time to order. They are expensive so I have to shop around and figure out the least expensive alternative.
Like many others, I wish we had a better system to get at wheelchair supplies and items. When this kind of thing happens it brings home how much harder it is to buy them. First there's sticker shock and then site after site wanted thirty dollars more to get it here quicker than their usual three to five business day period.
Ouch.
3.04.2011
Aaron does a FRONT flip in his wheelchair
Many of you have seen Aaron do his legendary wheelchair backflip. Now check this out....
3.03.2011
Say what?
My sister was turning pages for me yesterday as I plowed through my work. We have a signal I give her when I'm ready for her to turn the next page .Since I'm hooked up to a wireless mic and the voice recognition is on, I use a slight movement rather than a sound.
Apparently I unconsciously moved signaling her to turn the page so she did . I wasn't done reading or dictating notes and began to move again so she turned yet another page as I started to invent a gesture indicating back go back.
Yes we forgot to make that signal up.
Of course We both broke into laughter which registered two words on the voice recognition.
Richard Nixon.
No kidding.
Apparently I unconsciously moved signaling her to turn the page so she did . I wasn't done reading or dictating notes and began to move again so she turned yet another page as I started to invent a gesture indicating back go back.
Yes we forgot to make that signal up.
Of course We both broke into laughter which registered two words on the voice recognition.
Richard Nixon.
No kidding.
3.02.2011
A note of love every day
I'm reading The Illumination. In its first pages there's a woman whose husband has just passed away. She shows her roommate in the hospital a journal containing the notes her husband left her every day, notes of why he loved her.
And, of course, she gives that journal of love away to her roommate which doesn't surprise me. Those who know what love is do that.
And, of course, she gives that journal of love away to her roommate which doesn't surprise me. Those who know what love is do that.
3.01.2011
One of these days
There's so much hope in the disability community. Despite real stories about obstacles caused by cutbacks and lack of resources, I'm constantly finding people whose strong voices rise above the negative rhetoric.
Some are folks living with disability and others are nondisabled allies. They don't go around saying things like "one of these days". They find ways to circumvent problems and issues. Often it's done with a sense of humor and grace.
Sometimes the way people help is more empowering than the actual help they offer.
Some are folks living with disability and others are nondisabled allies. They don't go around saying things like "one of these days". They find ways to circumvent problems and issues. Often it's done with a sense of humor and grace.
Sometimes the way people help is more empowering than the actual help they offer.
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