Wednesday, November 30, 2005
This results in flaking and callousing, and blistering on the feet if I walk very much. Actually, blistering anywhere that gets too much friction or too much repetitive motion (like riding a stationary bike, which gave me blisters behind my knees), because those of us with EHK also don't sweat properly. We overheat.
Time will Tell
Back in the day, I got a lot more blisters -- partly, I think, because everything the dermatologists told me to do made my skin worse: take daily baths, cut off all the excess skin, and grease yourself up. These instructions made for a nice breeding ground for bacteria -- I also got a lot more skin infections back then.
Not to gross anyone out, but the "extra" skin on my body doesn't dry out properly either, if I take daily baths, so more bacteria and more odor.
I also got more blisters because no one thought to get me a wheelchair, so I was forced to walk, and walking = blisters.
I now pretty much do everything contrary to the docs advice. I get wet as little as possible. I use a wheelchair except in my home (because I need to save up for a ramp). I don't grease myself up every night.
Post 40 Syndrome
You may have heard about post-polio syndrome. It is the evidence that polio is the gift that keeps on giving. People who survived polio in their childhoods find new symptoms and difficulties arising in their 40s and 50s -- fatigue, pain, respiratory issues...
A couple of years ago, when I mentioned to my dermatologist how my skin was changing, and how I thought these changes must be related both to aging and also to hormonal changes associated with aging, he said sagely, "Huh?" Like, "that's interesting." Yes, I said, my skin seems to be getting thinner, and it hurts, like I have tiny fissures, all over. "Huh," he said.
The only suggestions he had harkened back to the advice of yester-year, and how they told my parents to take care of me when I was little.
Studies Show: Chronic Pain Shrinks Women's Brains
A few months ago, I saw an article at Third Age or Web MD that a study showed that women who had chronic pain also showed evidence of their brains shrinking. Swell. Can I say I'm cranky because I'm in pain, under treated for that pain, and keep getting headaches from my brain rattling around in my skull?
Take Away Message
In addition to a whine fest, I wanted to point out that many, many different types of disability feature that perk, chronic pain. My impression is that chronic pain in general is very unevenly addressed by our doctors, and that many of us just live with it.
Being in pain and just "sucking it up" also takes a lot of energy. Keep this in mind if you are one such and can't figure out why you're always so tired. Or maybe you have a significant other who is a crip who's always tired.
I think it is one of the biggest challenges that we face, us crips, to find a balance between expressing how we honestly feel, and not taking out our bad day on other people. I am trying to tell the people I trust that "I feel like crap", when I do, without being shitty to the people around me when I do.
Because, I work with other people who are in chronic pain, who don't necessarily say when they feel crappy, but act extra nasty, just to throw out a clue. The trick is, though, that if you're going to just act bitchy it helps if your disability is hidden.
The real anchor around your neck, if you're a crip with chronic pain with a visible disability is that if you either act bitchy or tired, or weak -- you're reinforcing the stereotype that you can't do the job, because of your disability. (Nevermind all of the people we work with that call in sick for a hang nail -- you've worked with them, haven't you?)
Except that, if you say, "okay, I give, I'm too disabled to work", the cards are stacked mighty high against you if you want to stop working and get SSDI and/or private disability insurance payments. More on that one next post...
Tuesday, November 22, 2005
Abilities Expo -- Northern California; Trickle Down Your Back Economics (as in, "Don't Piss Down My Back and Tell Me It's Raining")
An "Abilities Expo" is more like a Boat Show or a Car Show -- booth after booth of people selling stuff for the enthusiast. Only in this case, the enthusiasts are crips looking for the latest and greatest equipment, and crip friendly products.
Who Will Buy My, uh, Snake Oil?
I went to the Abilities Expo in Anaheim in June 2005, so going to the one in Santa Clara this past weekend was a little soon for me. But, I had a particular mission this time -- more about that in a minute.
I think the show in Anaheim was bigger, from both the perspective of the number of vendors and from how many workshops there were. (I'll be doing a separate column about the workshop I attended.)
What I noticed more in Santa Clara was the "snake oil" sales booths seemed more numerous. The "snake oil" came in four categories: wonder drinks, wonder vitamins, wonder lotions, and wonder appliances that free you from pain by accupressure. I wonder who buys that stuff.
I actually think I know who buys it: people who are desperate. They are often in pain and aren't receiving adequate conventional treatment for that pain, whether physical or psychic. I like to think that they can afford to drop a couple of hundred bucks on this stuff, but I'm sure some of them can't.
Now How Much Would you Pay?
Me with my genetically caused skin condition was probably not the ideal recipient of the hard sell pitch I got at the "wonder lotion/cream" booth. They had a "special show price" on an 8 ounce jar of the stuff for $40; the next smaller size, around 6 ounces, was $30. With the purchase of either of these, you got a "travel size" (.5 ounces) for free. But you couldn't buy the travel size.
I tried to talk the hard-sell girl into giving or selling me the small size to try. Her hard-sales objection was that the small size wouldn't be enough product to "cure me". I told her I was only wanting to see if it was a good moisturizer -- that was the most I was hoping for.
She stood her ground -- much to her discredit in my opinion. I was hardly the average customer for skin cream.
"You're just too shrewd for me!"
So, my mission was to scope out lightweight power chairs, for travel purposes only. The scooter I bought last year -- I just don't like it.
I'm looking at the At'm by Invacare. I had spotted it online, and wanted to get a gander at it in person, and see if there was anything better -- and affordable -- out there.
At the Wheelchairs and Wingnuts booth (see http://teriadams.blogspot.com/2005_08_01_teriadams_archive.html), I saw my pal Cedric, the owner. He gave me a free t-shirt, which seemed only right considering I've probably (including insured purchases) spent nearly $20,000 at his shop over the years.
He had an At'm sitting right there. After assuring him that a) I only wanted it for travel, as it really isn't built to take steady, daily use; and b) that I would be buying it with my own money, after Jan. 1st, he said he thought it was a good chair for travel purposes.
I asked him how much, knowing that I had seen it online for $1,395, including shipping, no sales tax. He thought about it and said, $2,500. At least he didn't say, "Because you're such a good customer, I'll only rip you for $1,100."
So I said, "2,500? Really. I've seen it online for $1,400."
"Are you sure it wasn't a Chinese knockoff?"
"No, it was an Invacare."
He looked somewhat dismayed. Finally he said, "Well, call me and we'll talk."
I said, "If you want to talk about $1,400, out the door. Otherwise..."
"You're too shrewd for me."
Take Home Message
Don't buy anything pricy at an Abilities Expo-type event unless you've already priced the item and know real numbers about what the equipment costs. Dispel any lingering naivete about, "they wouldn't rip off disabled people" thoughts. Just forget that. In fact, because people are desperate in many cases, and not up to speed with things, the vendors are more likely to rip you off because you might never figure out that they ripped you.
Sunday, November 20, 2005
So I bought these little disposal grinders/spices because they were on sale. McCormick makes 'em. One was "garlic pepper" and one was sea salt. Like I said, they were a buck a piece from Safeway.com.
I can't use 'em because they kill my hands. I think I might be able to use them if I put on rubber gloves (like the ones you wear to wash the dishes, if you're not fortunate enough to have a dish washer). But, donning the rubber gloves to season my chicken wings doesn't appeal somehow.
By the by, those rubber gloves increase your grip strength a lot, if you're doing something where the trusty jar opener doesn't help.
So, I'm going to give the little grinders to my sister, who cooks more than I do anyway.
Yes, I know there are other ways, tools to grind spices -- I'm not that interested, this was strictly a whim. Although it would have been cool, if I had been able to use a little grinder, off the shelf, for a buck.
When did Sara Lee Take Over the World?
All of a sudden, I'm aware of Sara Lee having way more products out there than I expect to see, including all manner of bread.
Most of my efforts at self-improvement are contingent on the effort being relatively painless. Hence, I have checked out both the Wonder Bread and the Sara Lee varieties of white bread that is "whole grain". If I understand the "experts" correctly, "whole grain" is what's good for you, "whole wheat" can be misleading, in that it can be no better for you than regular old white bread.
The Sara Lee "soft" white "whole grain" bread is good stuff. Makes good toast anyway. I'm on a kick of putting honey on my toast -- not because it might be slightly more healthy than jam, it is just a phase I'm going through.
The Wonder Bread equivalent (and I am a life-long eater of Wonder Bread, particularly for peanut butter and jam (not jelly) sandwiches) is nasty. Cardboard like. Don't buy it unless you're into small, bread-shaped frisbees.
I Won't Convert
My mom is a good cook. I never really realized how good until I was about 12 and ate dinner at a neighbor's house. The neighbor was a perfectly nice woman, but a lousy cook. It made me feel sorry for my friend, the daughter of the bad cook.
I grew up on Uncle Ben's Converted white rice. In the intervening years, I have learned that other types of rice, including brown rice, are better for my health. I don't care, I don't like brown rice.
The latest incarnation of Uncle Ben's, called "Ready Rice", is great, particularly for crips. It's about 2 servings (as a side dish), one serving for me, as I usually use it as a base for a bunch of broccoli or string beans. You nuke the package in the microwave for 90 seconds, and you've got perfect rice.
Yes, at $1.99 a package, it isn't the most cost effective way to eat rice. I understand this. But, given my typical alternatives of 1) a Stouffer's entree, which can be between $2.50 - $4.50; or 2) fast food, average $5.00, I'm still coming out ahead. Plus, I'm eating it with real vegetables (with real butter and salt).
Elegan by Rubbermaid Gets me Steaming
This is a great steamer for the microwave. It is sturdy and doesn't feel like you're getting a nice extra coating of plastic on your food. I've used it mostly for steaming broccoli and cauliflower, my favs. It is also comes through the dish washer like a dream.
This is the perfect example of a crip friendly piece of kitchen equipment. "Crip friendly" because as long as your microwave is set up at a good height for you, you can do most of your cooking in it sitting down. What really makes microwave sit-down cooking work for me is having a lot of counter space free to set hot things down, stirring, switching dishes and the like.
Sunday, November 06, 2005
I received this question in an email from someone who was referred to me at work:
"I am trying to accommodate a grandparent who no longer has the ability to open a dresser drawer by hand and would like some sort of solution that would allow her to do that. Is there some sort of generally available technology to motorize the drawers or attach a foot pedal or something like that?"
The first notable aspect of this question is that I've never heard it before.
How to Think About It
The immediate answer is that I've never heard of nor seen a dresser with powered drawers.
I do know of stove tops and counter tops, and even kitchen cupboards that are motorized so that their height is adjustable. I know of large motorized file cabinets that have Ferris wheel-like arrangements inside that bring an entire shelf of files to a convenient height to avoid reaching and stooping when doing filing.
I spent about half an hour on the web looking for "automatic drawer openers", and the only things I found were garbage compactors that had a foot opener option.
So -- the initial answer would be, "No, I don't know of any available technology like you describe."
But, my question is, "What is it about opening the dresser drawers that causes difficulty?"
Dressers I Have Known
I had a dresser (still have, actually) when I was a kid that has six drawers and stands about 5 feet high. The drawers slide in and out pretty easily, unless they are overfull. There is a handle on each side of the drawer (that is, 2 handles per drawer). They are horizontal handles that lift up, that you can wrap your fingers around. They provide pretty good leverage, and only hurt my fingers if my hands are already sore for some reason.
I have also used dressers where the drawers do not slide easily, regardless of how much stuff is in the drawer. Sometimes, the handles that are on the drawer are difficult to grasp, because of their shape or size.
I don't use dressers all that much because I don't like standing in front of a dresser stowing things, or searching for things.
Find out why Grandmother is having difficulty with the dresser.
Are the drawers sticking? Is the handle hardware too small, too awkward? Could the drawers be oiled or adjusted to slide better? Would different handles be helpful? What about tying tassels on the drawers? Would pulling on a rope/tassel be functional for Grandmother?
I have a newish dresser from Ikea, and the drawers slide very, very easily. There is one handle, right in the center of each drawer, and you hook your fingers underneath the handle to grasp it. The edge that hits your fingers is a little sharp, and if my fingers were a little more sensitive, it might be a problem. If that was the case, I would look into replacing the handles, because the drawer slide aspect is really great.
Think about the function of a dresser. To store clothing and other personal items, right? Would shelving serve the same purpose?
Just this year, I have started storing a lot of my everyday clothing on the shelves of what used to be a bookcase. I've also used this shelving, in the past, in a kitchen that had too little cupboard space. (The shelves are Swedish -- look at www.holdeverything.com. I have no affiliation with their site.)
There is a wide variety of shelving out there, in every price range. You can also get shelving shaped like cubes, and you can get baskets to use with the shelves, so that you can put things in the baskets, and then slide the basket out part-way -- a little drawer-like in usage.
I like the shelves in lieu of hanging things up, because I don't like standing at the closet. I can sit and use the shelving, particularly if I don't use the highest or the lowest shelves, except for items I don't use that often. This is also working for me because I pay someone to help me with my laundry, and she arranges my stuff on the shelves for me.
The Answer and The Lesson
So -- no, I don't know about motorized dresser drawers.
I suggest that the problem be approached from 2 directions:
- What does Grandmother use the dresser for, and can the dresser be replaced by a different type of storage system/furniture?
- What about the dresser has become problematic? Can this be solved by getting drawers that slide more easily or different drawer handles?
I hope this is helpful. Let me know how it works out.
We are approaching the worst time of year to cruise through a store if you use a wheelchair, or even a cane or a walker.
Even stores that are usually very accessible (Crate and Barrel comes to mind) put as much stock as possible out at the end of aisles and you can end up getting stuck or having to back up. Sometimes you just have to avoid whole areas of a store.
Depending on the day and the store, it might be full of shoppers milling around. Many times, these shoppers will, without warning, come to a complete standstill -- in an aisle, in a main store pathway. If you use a wheelchair, you often can't get around them. If you're like me, your cloak of invisibility clicks on about then, and amazingly, they don't see you.
Nor do the people who almost impale themselves on your footrests or push handles.
It's a hassle and I hate it. The only kind of shopping I can really get into, even during the holidays, is in a bookstore, and those also become pretty impassable.
For the last 4 or 5 years, I have done almost all of my holiday shopping online. If you're judicious, you can usually avoid sales tax, and shipping. Sometimes, even gift wrapping is free -- other times, it is a couple of bucks a present, which may be worth it, if you hate wrapping stuff as much as I do. (Gift bags are another great way to avoid the wrapping hassle.)
My Christmas Eve tradition is going to my parents' house with friends and family. We have a nice dinner and exchange presents. The last couple of years, I have had most of my gifts wrapped and shipped to their house so I don't have to haul them there. This has worked out GREAT! No shlepping, no shopping (except at home in the comfort of my recliner), no wrapping.
When I really started spending a lot of time on the internet about five years ago, there were a lot of companies that were trying to cash in on the geometric growth of internet shopping by opening "cyber malls", starting shopping clubs, you name it. I signed up with Ebates in December of 2000, but didn't really start using them until Spring of 2004. Since then, I've received $133 in rebate checks, and will be getting about $55 this quarter.
You can join at http://www.ebates.com/rf.do?id=1935512. (Yes, I will get a one-time $5 referral bonus if you use me, Teri Adams, as your referrer, if and when you spend money through their site. You will also get a $5 signing bonus, once you've used them.)
You just have to remember to go to their website (aka as the portal) to start with, and then click through to the merchant you want. They are up to over 800 merchants. You can even get rebates from Expedia, rental cars, hotels, eyeglasses, and wheelchairs through the Ebates merchants.
Some merchants don't do rebates but have coupons through the Expedia site for discounted shipping or special sales.
I have kitties, and carrying litter or bags of dry food is really hard for me. This applies to cases of soda, bottled water and a lot of stuff most people buy at the grocery store.
I still get a little choked up at the memory of Webvan, still the best grocery delivery service I ever used. When Webvan died, I switched to Safeway.com. They have various prices for delivery, depending on the time window you choose, and how much your total comes to. You can use your discount card, just like you would in the store, and their site has a feature where you can search for sale items.
I end up spending ten bucks a shop at Safeway, and do it about twice a month. When my brand of soda goes on sale, I can stock up; ditto cat food and litter. They even carry in the case of Duraflame logs I buy with glee.
The downside of doing your grocery shopping this way is that you don't get to pick your veggies yourself. The upside is that it dramatically reduces the impulse buy of candy, chips and cookies. You can even go back and revise your order up to about 24 hours before delivery.
I think that home delivery of my groceries has been one of the most important elements of living alone with a disability. Even if your home cooking is largely Stouffers and microwave popcorn (I often resemble that remark), it is still cheaper than eating all of your meals out. And it is way cheaper than getting someone to come and cook for you, if you can do the basics yourself; microwaving and loading the dishwasher.
Balancing Your Choices
Older people especially (I am guessing here, but feel it to be true) balk at paying ten dollars "extra" to get their groceries delivered. But you gotta look at the big picture. What you're buying with that ten dollars is independence, freedom from having to get someone to go with you and help you do your shopping, or depending on the kindness of strangers.
I order twice a month partly because I can keep myself in 1% milk by shopping that often, without running out, wasting it, or having it go sour.
If you stock up when your favorites go on sale, you can save enough to make up for the delivery fees. On the order that I had delivered on Friday, I saved 14%, and got up to 20% savings on the order before that.
Another Form of Assistive Technology
I don't think it is hyperbole to say that using computers and internet shopping intelligently is another form of assistive technology for people with disabilities that hamper tasks like shopping and shlepping. At least try it a few times, before drawing conclusions.
So, I was pretty psyched when I heard about the single cup machines when I started seeing them advertised about eighteen months ago. I don't know that they've caught on, but I love mine. It is very crip friendly.
I'm lucky that my current abode has a lot of counter space. I would, however, keep this on the counter even in a limited counter space situation because I use it almost every day, and often twice a day or more. You can also make a cup of tea with it.
So, you fill up the water tank and place it on the back of the machine. I've heard that you'll get leaks if you overfill the tank, so I haven't tried overfilling. Hence, no leaks. After I determined that I loved the machine, I bought the larger water tank that's available, so I don't have to fill it as often.
The machine comes with a one pod and a two pod holder. All of the single cup makers define one cup of coffee as 4-6 oz. I define a cup of coffee as at least a 12 oz. mug. So I pretty much always use 2 pods, and get a nice strong mug of coffee.
You can, however, get a mug of medium-strong tea out of one tea pod.
All of the removable parts of the machine go into the dishwasher (top rack), so no excuses to let it get groady.
I have a rolling office chair in my kitchen, from which I do most of my cooking, though I can stand if I absolutely need to.
So, I plunk myself down in the chair and push the power button. The power button flashes until the water is hot. Solid light means it is ready to go. While the light is flashing, I open the top, pull out the pod holder and load it up. You do have to be careful about making sure the pods are stacked right in the 2 pod holder so that you get a good seal when you clamp the lid down. (I read reviews of people complaining about leaks here, too, but I've found that if you use the parts correctly, no surprise leaks.)
You put a mug under the spout and push the two cup button to get your mug of coffee. Steam is forced through the pods and you get a layer of foam on top, which I happen to like.
I researched the hell out of these machines when they came out. I had bought a regular thermal carafe maker a couple of years ago, despite finding lukewarm reviews about the machine, and HATED it. So, I thought I would try to avoid another shopping mistake.
Melitta also makes a pod single serving machine, and I think a couple of other makers do as well. I can't say that the other machines are bad, only that this Senseo one by Phillips is really great, and I've been using it for about a year with no problems.
My Favorite Pods
I like really strong coffee, and the only pods I've found that are strong enough for me are these:
Obviously, you don't want to buy a ton of them until you try them out. I've found the Douwe Egberts brand everywhere, from Longs to Safeway. I believe Home Cafe pods are also compatible, but be sure to double check. There is also a website called www.podhead.com if you feel adventurous.
Through Amazon, I also found a brand of tea that makes pods that fit perfectly in the single pod holder:
My guess is that most round tea bags would fit, but I haven't experimented much.
Take Away Message
As long as the water tank is filled (I have short arms and my counters are a little high, so I really need to stand up to fill and load the water tank), I can sit and make myself a great cup of tea or coffee with this machine. I keep my mugs in a lower cupboard with a pull out shelf, so I don't have to stand and reach for cups, either.
Everybody has to find the best way to do things for themselves -- and there is often a lot of trial and error involved. The point is that you need to be creative and willing to try new things. Sometimes, you might make a mistake and buy a tool or try a method that doesn't work at all for you.
If that happens, ditch it and start over, but incorporate what you've learned. And remember that the most expensive way isn't necessarily always the best.
If you're doing the math, I figure that each cup of coffee costs me about 50 cents. I have spent 3 times that at Starbucks for just coffee. And when I was making coffee by the pot, the per cup cost was probably less, but I wasted a lot of coffee...
Drink long and prosper.
Wednesday, November 02, 2005
When I started thinking about what I could put on the web related to disabilities, one of the things I was interested in was talking about "crip friendly" products. I will only be endorsing (or criticizing) products of which I have personal knowledge.
Other entries about "Cool Crip Culture" will include books and movies, as well as services.
I've signed up with Amazon to get these links, and I'll get a 5% commission if you buy it through my link. Which will come out to 35 cents in this case. You can also easily avoid my minor entrepreneurial impulse by buying it somewhere else, or through another vendor.
The price of my soul is considerably higher than 35 cents, so I hope you believe me when I say I wouldn't recommend anything I didn't absolutely believe in, through personal experience and/or use.
Through the comments feature, feel free to let me know if you hate a product I've recommended. Or, if you like it.
I like this jar opener by OXO so much that I have one at home and one in my desk at work. I'd really like to get another one, for my nightstand.
I'm not a huge consumer of food that comes in jars, you understand, but these little babies also are great for opening drinks -- bottled water, flavored waters and sodas, and "new age" soda/juices like Sobe. If you don't have much grip strength, for whatever reason, this is a great help.
They are also very well made, and have the OXO "good grip" surface on the handle. Hard plastic would kill my hands.
The only caveat about this opener is that you also need to have a fairly good grip on whatever it is you're trying to open. I approach this is a variety of ways. If it is a bottle, I often grasp it between my legs and with the hand that isn't using the opener.
If it is a big, fat jar, I use a rubber glove on the hand that isn't using the opener, to increase my ability to grip the slick surface of the jar without killing my hand.
I tried several different openers before I found this one about 4 years ago.
One kind is bolted to the underside of your cabinets -- you jam the jar lid against the teeth of the opener and turn the jar. I don't know if it's because I'm weak, or short or awkward, but this method almost never worked for me, and often resulted in my dropping the jar. And hurt my hands.
Another type is sort of funnel shaped, with a soft exterior, or with a soft interior surrounded by hard plastic. You hold this in your hand and place the whole thing on top of the lid. It is supposed to increase your grip strength. I almost never got anything open, and the hard plastic especially killed my hand.
Why This Works, For Me
The combination of the length of the handle, and the size of the "pie wedge" part of the opener where the teeth are, really lets you transfer the strength needed to your arms instead of your hands and ability to grip.
A Small Thing, But...
Oh yeah, I also want one to put in my suitcase. Have you ever been in a hotel room, eating room service food, and you can't open one of those little condiment jars of ketchup or mayo or jam or honey? I've been so frustrated by that one that I've wanted to throw the little mother through the window!
It All Adds Up
What I know, at the advanced age of 48, given a lifetime of notable disability, is that every little thing you can do and find that makes life just slightly less hassle takes away a tiny bit of the sting of the big things you can't change. Yet.