It’s hard to believe….

the last time I posted on this blog, we hadn’t even re-(s)elected Bush. I think I got really depressed after that election, and had a hard time caring about anything. At any rate, I’ve migrated this blog over here from Live Journal, because I can’t figure out how to do anything over there. I really like the dashboard over here.

So what’s happened since then?

1. Well, I’m taking Celebrex. And deciding whether at this point it is worth the premium co-pay to keep taking it. My osteoarthritis has progressed to the point where it seems nothing helps except staying off my feet.

2. I’ve gotten my SSDI, and now I get to play with Medicare and Medicare D(isaster). I had great fun spending the lump sum I got, (known around these parts as “crazy money”), but now I’m back to genteel poverty.

3. Friday, my service dog, is still around, but almost as arthritic as I am these days.

4. Epona, the scooter works, but she needs new batteries. That’s going to hit my pocketbook. Since I didn’t get her from Medicare or Medicaid, I am responsible for her maintenance.

5. I’m still pretty much of an insomniac.

6. I’ve given up on politics for the moment. The Democratic primary race is driving me nuts.

7. The Boyo is still around. Thank heavens.

 

Oh, arrrrrghhhh!

Of course it is old news by now that Vioxx has been taken off the market. After I jumped through all the hoops, I stiil can’t take a medicine that helps me because there is a small chance it would harm me. Don Bordeux thinks like I do, that I should be able to determine for myself what amount of risk I am willing to take, and not have a government decide for me. I understand that it is the fear of class action lawsuits that is causing Merck to take Vioxx off the market. At least Kevin, MD has some suggestions as to alternatives if you can’t take/can’t get Celebrex and Bextra.
I am looking for some new alternative to my therapist I have been with for three years, since their agency dropped Medicaid coverage, and I can’t afford much of even the lowest sliding scale they offer. I am sure some of the other agencies that are subcontractors will quit taking Medicaid, too.
The elevators are acting up again. It has gotten so bad that the Kone elevator people are talking about camping on a cot in the lobby. And then when only one elevator is working, there is always the clown who rides to the second floor, but pushes all the buttons for the other floors before he gets off. A lynch mob is being formed…..
I had a nice visit with some folks from the Community Psychiatric Clinics who came to talk to the residents. I was able to give them some information from IAADP about service animals for psychiatric disabliities.
Well, I promise to rant sooner next time. And now off to bed.

 

My Point of View…

Last night on PBS, they had a program called P.O.V. Freedom Machines. The program was on the new technologies that can assist the disabled, and how difficult it is for many of the disabled to get the technology they need. Heaven knows, if it wasn’t for my father and The Boyo, I wouldn’t have the technology I need, not even this computer. The people on the program were both young and old, and had varying levels of disability. It is difficult to watch a bright, ambitious teenager denied the tools that would help her in college because she is poor and lives in a poor school district. It is difficult to watch a very talented blind woman in a job interview for a special education teacher, and know that she probably won’t get the job. Seventy per cent of all disabled people are unemployed. I think the percentage is probably higher in my building, since it is for low-income people.
As well as the computer, my scooter is a freedom machine. If my father hadn’t bought it, I wouldn’t have it. I do not qualify for a power mobility device under the Medicare and Medicaid rules. The rules until this year were that you had to have difficulty getting around at home. Now the rule is that you cannot be able to take a single step. As Medicare Games says, the rules have changed. And even the people who have followed the new rules are getting turned down for chairs, including a nun with severe arthritis in her knees and shoulders. Some of these people could live semi-independently if they had a power chair, now they may need to go to a nursing home because they can’t get around without assistance.
We really must give up the medical model for disability in this country, and adopt a social model. If a person like the nun described above cannot get a power chair, they become more dependent on the community. In the case of people who live in circumstances like mine, they may not be able to leave their apartments to go downstairs to get the mail. This means they will be socially isolated, which is a darn good start for depression. Which may lead to deterioration, increased health problems, higher medical costs, if only for the antidepressants, need for long-term care and death or suicide. People tend to not eat well, not sleep well, not exercise, etc. when they are depressed, causing more health problems. People need to get out of their rooms and interact with other people.
Now, in my case, I can walk down stairs to get the mail. I can walk across the street to “walk” my dog. I can even walk to the video store, two blocks away, and walk back. But that is the end of my range. I also have difficulty walking up steps, so it is difficult to get on and off a bus without a lift. If I go to the store with my grocery cart, I can’t take my walker, too, and walking without it increases my pain. With the scooter, I can get out to the grocery store, and if I use the cart at the store to shop, I can even get home with enough energy to put the groceries away. Otherwise I will have to sit down because I am in pain. Without my scooter, I am dependent on Access to get to my therapist’s office, because it is a quarter of a mile away from the nearest bus stop. It also helps me to get outdoors and get enough daylight, particularly important because my depression has a Seasonal Affective Disorder component. I don’t fit the bill for “medical necessity” under the Medicare guidelines, but I would be very socially isolated without my scooter, my depression might increase, and I could end up hospitalized again. Trust me, my scooter would have cost the taxpayers less than the ten days I spent on the psych ward at University of Washington Medical Center. I think it is a good investment in keeping me going.

 

Top Twelve Things that Annoy Me As a Disabled Woman….

And a few other miscellaneous rants.

1. Handicapped stalls that aren’t big enough for a baby stroller let alone a regular wheelchair. Heaven help you if your conveyance needs a “Wide Load” sign. Kudos however, to Bellis Fair Mall and Westlake Mall, which both have handicapped bathroom stalls big enough to drive a scooter into.
2. Doors on handicapped stalls that are installed so they swing in instead of out. You try to get a wheelchair or walker into the stall with the door in the way.
3. People who sit in the bus shelter and smoke, forcing those of us with asthma to stand or sit outside in the rain. Take your pollution to where it can go into dilution, outside the bus shelter.
4. People who try to distract my service dog. Yes, she is cute as a button, but she’s working. Leave her alone. That goes double ditto for guide dogs, whose owners can’t see you annoying their dogs. Moreover, our dogs aren’t slaves; they are much happier having work to do than they would be staying at home alone for long hours.
5. People who try to feed my service dog. She doesn’t need any more food than I give her. The man who was throwing French fries to her on the bus gets special mention.
6. People who ask what my disability is. It’s none of your business. This was especially annoying while my disability was invisible, before I got an assistive device.
7. I live in subsidized housing for the elderly and disabled. Just because I have a Belltown address doesn’t mean I have Belltown money. Target your audience a little better, save some trees and money by not sending me advertising for high-end condos and restaurants. This advertising is more annoying to me than the ads I get for incontinence products. Which I also don’t need.
8. Curb cuts that are outside the area of the crosswalk, or which require an awkward wandering to get from one side of the street to another. I hope that someday all the curb cuts will be like the new ones at Fourth and Cedar, in the crosswalk both ways and with the knobby surface.
9. I was on a bus once when a woman with a mental disorder of some sort began talking to herself. Other passengers were very rude and began laughing at her. There is nothing fun or funny about that sort of disability. How would you like it if they were laughing at you?
10. People who publicly complain in the newspaper about disabled people taking up space on a crowded bus. If said person is always on the bus in the evenings, she is probably tired and going home from work, too. Be grateful, she’s a taxpayer, unlike myself, who hasn’t been able to find a job I can do with my disabilities yet. Even the job the Social Security Administration says I could do (working in a call center, a major employment venue for disabled people) are going overseas. It is estimated that about 70% of the disabled are unemployed. Be grateful you have a job to go home tired from. It beats living on GA-X or SSI by a wide margin.
11. Inaccessible “accessible” restrooms. They have the fancy new flat handles, but no electric opener. If you are in a wheelchair or on a scooter, you have to wait for someone to let you in and out the door. IMHO, it’s not accessible unless it has the electric opener. I want to do it myself, thank you.
12. People who walk down the street talking on cell phones or with I-Pods, etc. stuck on their ears. They can’t hear me behind then, even when I ask to pass them on the left. They walk straight across your path. They can’t decide which side to walk on so you can get past them. And of course, the horn on my scooter is puny. No way you could hear it in traffic. Hang up, get the earbuds out of your ears and pay attention to where you are walking. I have threatened to get one of those portable airhorns to use, especially when they stop suddenly right in front of me. I am trying not to hit anyone.
What brought this rant on was visiting our new library, which is supposed to be very cool, (designed by Rem Koolhaus), but isn’t all it’s cracked up to be in the accessibility department. Along with the narrow book spiral, the Fifth Ave. door, which has the buttons on the wrong side in a sort of dark airlock is super annoying, (I couldn’t figure out how to get out of it until I read the news story.) The Fourth Ave. entrance doesn’t have the annoying airlock, and the buttons are on the correct side, but when you are outside, and press the button on the right, the left door opens. What, too cheap to have both doors open?
The other model of inaccessible accessibility is right down the street at the Seattle Downtown YMCA. It advertises that it is in a newly renovated, classic building. Classic, circa 1920, when young Christian men never had disabilities. There are 10 steps up to the door. There is a lift, and an intercom to call someone to assist you with the lift. The only problem is that so far, every time I have been there, the intercom has not worked properly, and I end up crawling up the stairs, which my knees just love. And then, the lift is old and balky. As I said before, accessible means I can do it myself.
Which reminds me of a T-shirt I saw at the Pow Wow. It said, “The American’s with Disabilities Act, To Boldly Go Where Everyone Else Has Gone Before.” I want one, but they were made by a state agency for the 10th anniversary of the Act in 2000.
And speaking of rants, Mark on the 19th Floor has threatened to write an Idiot’s Guide to Disability Etiquette. Jody and Katja are both threatening to collaborate with him on it. Count me in. People are always trying to help me when I don’t need it, but it’s difficult to get some people to help you with obvious things, like getting something down for me from a shelf over my head.
“Well,” said Pooh, “it’s the middle of the night, which is a good time for going to sleep…”
G’night, all.

 

It’s been a long time….

Since I posted here. Well, I was gone for a week, and didn’t even have decent access to a phone, much less the internet while I was gone. The workshop I attended to become a Master Trainer in the Chronic Disease Self-Management Program were great. However, I went down there with somebody I didn’t know well, and we hit it off like matches and gasoline. I will give some blame to the Mercury retrograde that is still ongoing, but there is equal blame to go between us. The gentleman thinks I am ungrateful, and I think it is poor self-managment for a couple of gimps to fly to Salt Lake City in order to get to San Jose. After all, it would increase our risk of deep vein thrombosis, and if you know how to shop for airline tickets, it isn’t even cheaper. But what was done was done, and I certainly didn’t have enough money to buy my own tickets. Maybe I am picky, too, but I don’t think I should have to put up with little black ants in my bathroom sink just because we were only paying $45/night for the motel. I don’t have them in my apartment, and I don’t expect to find them when I travel. Of course, the only place I have been out of the US is to Vancouver, B.C. when I was still sort of middle-class, and there weren’t any ants there.
Adding to my misery outside of the workshop is that Epona, my scooter, apparently didn’t take to flying very well, and stopped working while I was in Palo Alto. So I had to drag a broken scooter home by the skin of my teeth, and with no help since I managed to totally piss off my traveling companion, and he left me with $30 and told me to get to the airport on my own. Well, I made it, so there!! I still don’t know what is wrong with Epona, the technician is supposed to come later today.
Another good reason not to fly to Salt Lake City is that of course, you are on Delta, which has its hub there. I suspect something Delta did caused the problem with my scooter, and they managed to break one of the brakes on my walker, damage the baskets on both my walker and my scooter, and generally piss me off. First, they fly MD-80-90s. These planes are right up there with the Airbus 380 for lack of room at the bulkhead. And of course, the bulkhead is where they put people with service dogs. I was thanking my stars I was traveling with a Cocker Spaniel, and not a 180lb. Rottweiller. The only airline that seems to know what to do with service dogs is Alaska, where they put you in the back row, where the dog can get under your seat, and or the seat ahead of you. And they always leave an empty seat for the dog, so you are crunching your neighbors. And guess what? They have a direct flight to San Jose. Even their one-stop flight stops in Portland, OR, which makes much more sense than SLC.
Friday was given her own certificate at the workshop, and they also presented her with a little bone pin. So now she is a Master Trainer in the Cocker Spaniel version of the program.
Well, I’ve managed to stay up all night again, and I need to get some sleep before the technician shows up. See you later.

 

Playing Ketchup..

OK, I couldn’t resist a Kerry pun. Meanwhile back at the ranch…. I got the state to fill my prescription for Vioxx. I just had to ask “how high” when they said jump. Basically, I had to prove I couldn’t make do with a cheaper drug. After three days back on it I feel “normal”, for what it is worth. At least I am not having to take Vicodin several tims a day to cope with my pain load.
Tomorrow, at O’dark-thirty as they say, I am off to San Jose, CA via Salt Lake City. I totally hate the airline hub system, and if I had booked the damned thing, it would have been a direct flight. It is hard on Friday to wait so long to go potty. I can only hope there is a way I can take her outside in SLC. I am going to take training to be a Master Trainer in “Chronic Disease Self-Management.” Yeah, right, like I’m eating well, sleeping well and exercising to manage my own chronic diseases. Oh, well, perhaps I will be inspired to do so.
It is strange to me, living in abject poverty at this time, that people keep paying for me to travel. I have had two trips to Colorado to see my Dad this year, and now this, all on somebody else’s nickel. I never traveled this much when I was earning a decent living. (Of course, I never had time to travel when I was working. You either have time or money, not both. In my case I usually had neither.)
I wanted to slap my doc when he told me not to put myself in a victim mode because of the changes the state was making. They are just trying to help me. Bullshit! They are trying to cope with revenue shortfalls caused by the crash of the dot.com bubble here in Seattle, along with tax cuts imposed by “starve the beast of government” initiative writers like Tim Eyman. I am truly amused that his website is at “permanent-offense.org.” Well, he does permanently offend me. I am proud to say the only Tim Eyman petition I ever signed was the one trying to have him designated a horse’s ass. Well, even horse’s asses have their uses. I hope most of the people in Washington state by now can see he is shallow and selfish, and making a living off of writing this crap.

 

Lammas

Today we had our annual Lammas ritual at CUUPS. I would put the local link, but it has turned into a cobweb for reasons I can’t go into. Michael made the Lammas Man, and a couple of new people came to the ritual.
We are slowly rebuilding after almost dying at the end of last year. We seem to have just been about six months ahead of the rest of the Pagan community around here. Several “leaders” are bowing out, and leaving some really big gaps to be filled. Oh well, time is a cycle, and all things change. The Boyo is here now for the night, and I am looking forward to our dawn rites in the morning.

 

Misery loves company

Or so they say. I have been really miserable today, having a lot of pain. Besides that, not going outside has made me depressed and irritable. I’m afraid I took it out on the Boyo. Well, in a way he deserved it.
The Torchlight Parade runs down Fourth Avenue where my apartment is every year. Yeah, it’s supposed to be fun. I just love having 300,000 strangers in my front yard. Every year we reserve places out front to sit, to keep from being crowded out by interlopers. And I guess there were some security concerns last year, because this year we were notified that two security guards would be checking ID of all who came in the building.
Since the Boyo was going to watch the Parade with me, I called him in the morning to tell him of the ID requirements. And so, he promptly forgot his ID. OK, Dumb. You don’t go anywhere in the present police state without ID. And that threatened to keep him out of my building. I didn’t take this well, especially since he decided since he couldn’t come to my house, he would go to his friend Jim’s. And I screamed at him about it. He said “But the idea was to watch the parade, wasn’t it?” I had to break his bubble and inform him that no woman counts being in the midst of hordes of people as time spent together. Well, anyway, I wanted a little face time.
He came over to watch the parade, and bought me ice cream, a popsicle, and a blow-up pink crayon. Which, by the way, I know he can’t afford. That’s not what I wanted, I wanted face time.
Well, the best laid plans of mice and men go awry, and so did the plan to keep the riff-raff, including the ID-less Boyo out of the building. Right at the end of the parade, a gang fight broke on the sidewalk in front of the building, distracting one of the security guards, and overwhelming the other one with people streaming into the building carrying chairs and trying to get out of the way of the fight. So I got a little face time with the Boyo after all. Nothing else, he had to be up early next day. Phooey!!

 

Blah, blah, pain, blog

I haven’t been out of the house in a couple of days because I am having so much pain. If I had any doubt that the Vioxx made a difference, I know now it does. I just want to sit. Yuck. Poor Friday has Attention Deficit Disorder, and inordinate need for attention. She will crawl under my legs when I’m sitting at the computer just to get attention. I’ve done the “outside, food, water” assessment, and apparently she just wants to be close to me. Of course, she hangs pretty tight when she knows I am depressed, too.
In other news the elevator is fixed, we can use both of them. Yipee!!! No more crowding scooters, wheelchairs, and walkers into one elevator.
Kerry talked a good talk last night, and I hope he gets a chance to walk the walk. I got my accessible Kerry bumper sticker and button from Mark at the 19th Floor the other day, and had to figure some way to put it on my scooter, since it won’t stick well to the cloth. The Boyo came up with a piece of heavy plastic he punched a couple of holes in and hung around the headrest of my scooter, and thereon rests my bumper sticker. And a few more I hope to acquire.

 

The headline caught my eye…

In the latest edition of Real Change. Real Change is the local homeless newpaper, and so the headline “I wouldn’t feed that to a dog” was intriguing since I had posted elsewhere about the lousy food the homeless get. No such luck. I guess maybe since the author is still homeless, he maybe didn’t want to piss anybody that he might be dependent on a meal for off. So I sent them an email, thus:
Hello there,
If you are going to have a headline like that, I would like to find something of substance behind it. David Trotter’s article was ever so nicey-nice. The worst thing he can say is the UGM aren’t Christlike because if you don’t listen to their bull….. er, I mean sermon, they want you to plunk down $3. If you had $3, you would go to McDonalds. I agree with him, but if that’s the worst example he can come up with, you should have changed the headline.
From my experience of homelessness, (and I was in a nice, cushy transitional housing situation, not on the street) there is plenty of things to justify the headline. He should have gone to eat at the Aloha Inn.
Now, Flo Beauman and her staff do excellent work considering the ever-decreasing amounts of money they get, and I am ever so grateful I landed there. However, with that said, despite great efforts, the food was often despicable. And I am sure any food program that relies on donations from food banks is the same. You can’t make a silk purse out of a sow’s ear. There was the batch of some noodle dish I am sure was donated by some restaurant because it had been vastly oversalted. But poor, homeless people could choke it down. You were wise to check the bread for mold and the milk for souring before you proceeded too far as we got them when they were outdated. A lot of times the produce for the salads was mushy. We got it when it was old, too. There was the totally tasteless white salmon nobody would eat, and some kind of fish with a million bones. And then there were the grilled cheese sandwiches made with cinnamon bread.Then there were the “heart attack nights” when every thing was deep fried. These are but a few of the memorable meals we en….dured.
We got supper, usually for sure, but a couple of times, the kitchen never did open. You were really out of luck if that happened, and you didn’t have any money or transportation to go get something to eat. If there were leftovers, they might be put out for lunch, but you couldn’t count on it. Depends how good the supper was the night before. We had breakfast most Sundays, and supper. Bonus. You could get a packed lunch if you worked or went to school, but sometimes it had really weird stuff in it. Mushy, pulpy apples come to mind.
Not every meal was bad, some were downright delicious. Once we even got a catered supper from a classy restaurant. The holidays were always great, Flo would bust loose some money to make sure we had good meals. But for the most part, they had to make do with what came in from donations.
Trotter also missed the point about all the sweets that are out there. Grocery stores pull that stuff very quickly, usually the next day, and so it comes to food banks. Food banks are awash in it. We drowned in it at the Aloha. Sometimes it was all there was to eat for breakfast and lunch. This high fat, high cholesterol, high sugar diet tends to have people gaining weight. Flo has often threatened to make “gained tonnage” one of her annual statistics. Yes, it has little or no nutritional value, and I not sure which is worse, hunger or reactive hypoglycemia. Some doctors have even put their patients at the Aloha on prenatal vitamins, (and some of them were elderly men.) Just because you weigh 250 lbs doesn’t mean you aren’t hungry and malnourished. And yes, I wouldn’t feed some of that stuff to my dog, but then again, she eats better than I do a lot of the time.
I know, I know, I’m not living in a cardboard box at the dump in some Mexican city, but I don’t think THEY should have to eat garbage, and neither should I.