One of my friends, when I described my symptoms she said she thought it was the lyme that was whipping me worse then the fibromyalgia. I can no longer use staircases is any normal fashion. I have 6 steps I need to traverse each day, an indoor staircase, and I use the "strength" of my arms to get me down the case. I hold the banister with left hand and brace my right arm on the wall, and walk down trying to put no weight on my osteoarthritic knees.
In the middle of the night, I try to roll over and I can't. I try to pull the covers over me and I can't. When I do get to a sit position, and hoist my way up, it feels like my feet are numb, they don't want to hold me in a stand position. I feel like I'm going to fall over. I walk at the pace of a 102 year old.
But, I can still hula hoop. At a party last night I did about 6, 15 minute sessions maybe longer.
There are no words to describe the pain yu already have, then the pain of the hoop on your body. But my spirit is that of a 21 year old, so I can't just not hoop. Generally speaking I am typically very very weak and for the last 7 years or so, if there is a handicapped automatic door opener on a bldg. I always always use it.
Saturday, April 7, 2012
Tuesday, April 3, 2012
"Retail Hell" (book by Freeman somebody, i can't remember
This book tells it like it is. Freeman spent 20 years gay and working in places like Nordstrom selling purses, NO! MAKE THAT HANDBAGS!
He puts up with horrid conditions on every level and works with many incompetent people.
Yesterday, I went to the "drive in" because I saw they had 79 cent cheeseburgers. I asked if you are allowed to eat their food if you don't have a car. They said yes, but you have to walk up then wait outside.
So, they bring me a hamburger! I check the ad, no i did indeed order a cheeseburger. I pressed the call button and said "How do you screw that up? All I ordered was a cheeseburger and you brought me a hamburger!"
They brought it back in, threw a slice of cold cheese on it and came out.
I walked to "9-11" convenience store. I got a cold coffee. The sign clearly reads $2.19. He rings me up at $2.49. i said "No, it's 2 19. he stared at the register then asked another employee the price. She said she didn't know. I said "do you need me to walk over with you to prove to you it's $2.19?"
"The woman said "There is no need for you to go getting all upset and all that, he'll give it to you for $2.19 then"
Yes, it is very upsetting! When nobody can get a fricking thing right EVER!
i remember blogging about The journalistic tv show that did the undercover story on how so many stores post one price but charge a higher one. Years later the tv cameras went back, and the problems were never corrected.
He puts up with horrid conditions on every level and works with many incompetent people.
Yesterday, I went to the "drive in" because I saw they had 79 cent cheeseburgers. I asked if you are allowed to eat their food if you don't have a car. They said yes, but you have to walk up then wait outside.
So, they bring me a hamburger! I check the ad, no i did indeed order a cheeseburger. I pressed the call button and said "How do you screw that up? All I ordered was a cheeseburger and you brought me a hamburger!"
They brought it back in, threw a slice of cold cheese on it and came out.
I walked to "9-11" convenience store. I got a cold coffee. The sign clearly reads $2.19. He rings me up at $2.49. i said "No, it's 2 19. he stared at the register then asked another employee the price. She said she didn't know. I said "do you need me to walk over with you to prove to you it's $2.19?"
"The woman said "There is no need for you to go getting all upset and all that, he'll give it to you for $2.19 then"
Yes, it is very upsetting! When nobody can get a fricking thing right EVER!
i remember blogging about The journalistic tv show that did the undercover story on how so many stores post one price but charge a higher one. Years later the tv cameras went back, and the problems were never corrected.
"Dumbing down of america/gross incompetence at every level"
Maddening, absolutely maddening. Every where you go, every city every state, unless you are really rich and can afford the very best, it is nothing but maddening incompetence and it can ruin your life.
Just today for instance, I was waiting for the laundromat people to drop off my clean clothes at `10 a.m. as agreed, since I have no way of getting my clothes there.
No one showed up, and I have nothing clean to wear to my next appt! So, I call them and say "you agreed to do a drop off at 10 a.m."
"well, the clothes not dry yet" "plus our delivery driver already left for vacation!"
me-What? You should have called me then.
them-you'll just have to call back to arrange another appt!"
(no tip for you baby)
Then, I heard via word of mouth that medicaid will pick you up for drs appts. So I arranged it, but since I no loger trust anyone, I figured the van would never come.
1130 came and went. I called Medicaid, and they said "Oh let me see why they didn't show up" (put me on hold for 10 min or so)
"OK we called you a cab." (oh no I thought, the cabs never can find me)
He did indeed get lost.
I showed up to the pain management clinic where I've fought to get in for almost 3 years. But i figured based on how poorly his receptionists have been operating, that it would likely be a nightmare. It was.
The door said
Pain Management "We'll SHOW you the meaning of pain!"*
So, I come in the door, and I see that neither of the staff speak english, just Japanese!
Ironically, in the more then an hour I was on hold with Medicaid, they ran ads that said
"make sure your dr. speaks your language" I thought that's a joke, nobody speaks English!
So, the waiting room is a disorg. mess and I can't find where to check in. The secr. tells a patient "sorry you been discharged"
"What does that mean" he patiently asked.
"Discharged you been discharged" She turns to the other Japanese woman and they try to find an English word that fits what they mean.
Eventually the man figured out they were saying that his insurance was cancelled! He said "Well, can't i just pay cash" He went outside on his cell to discover his insurance had not been cancelled.
They give us many sheets of paper to fill out the print is so tiny I can barely see. An autistic kid is screaming because his mother doesn't have the skills to deal with his behaviors.
The form asks me "what is your best pain?"
WTF?! I asked another patient he had no idea, so I asked the Japanese woman, they didn't know either. So, some man from the back (the so called doctor) says "That means the least amt of pain you feel!"
They take me to the back and I see the electronic bp cuff. I said "Please use the manual"
"What?"
"Please use the manual cuff"
"Don't understand"
She tried 5x and it's excruciating with the electronic cuff, she can't get my bp. Other arm, another worker, no luck.
Then doc runs in makes no eye contact puts papers on a desk and runs out saying "back in a minute"
comes back 10 min. later, get's the papers and says "just one more minute"
he comes back again, spends 15 min. reading papers never looks at me never smiles and never introduces himself.
I will share now some of what he said but not all.
Dr.-"How do you KNOW you have neuropathey, who told you that?!"
Dr.-"How do you KNOW YOU have arthritis who told you that"
Dr.-"Well, if you think you are just going to walk in here and I'm going to put you on pain meds you have another thing coming."
Dr._I need to have a long talk with your psych provider first!"
Me-What? I have no providers in Mountain Town, no one is serving me in any way.
Dr.-"Well, then who am I supposed to talk to about you?"
Me-(Isn't that your job to figure out if I have no health care in Mt. Town?)
He dismisses me and I clearly understand why people self medicate.
I call the cab company, he pulls into the plaza then leaves instead of calling me to tell me he's lost!
EXHAUSTING!
Just today for instance, I was waiting for the laundromat people to drop off my clean clothes at `10 a.m. as agreed, since I have no way of getting my clothes there.
No one showed up, and I have nothing clean to wear to my next appt! So, I call them and say "you agreed to do a drop off at 10 a.m."
"well, the clothes not dry yet" "plus our delivery driver already left for vacation!"
me-What? You should have called me then.
them-you'll just have to call back to arrange another appt!"
(no tip for you baby)
Then, I heard via word of mouth that medicaid will pick you up for drs appts. So I arranged it, but since I no loger trust anyone, I figured the van would never come.
1130 came and went. I called Medicaid, and they said "Oh let me see why they didn't show up" (put me on hold for 10 min or so)
"OK we called you a cab." (oh no I thought, the cabs never can find me)
He did indeed get lost.
I showed up to the pain management clinic where I've fought to get in for almost 3 years. But i figured based on how poorly his receptionists have been operating, that it would likely be a nightmare. It was.
The door said
Pain Management "We'll SHOW you the meaning of pain!"*
So, I come in the door, and I see that neither of the staff speak english, just Japanese!
Ironically, in the more then an hour I was on hold with Medicaid, they ran ads that said
"make sure your dr. speaks your language" I thought that's a joke, nobody speaks English!
So, the waiting room is a disorg. mess and I can't find where to check in. The secr. tells a patient "sorry you been discharged"
"What does that mean" he patiently asked.
"Discharged you been discharged" She turns to the other Japanese woman and they try to find an English word that fits what they mean.
Eventually the man figured out they were saying that his insurance was cancelled! He said "Well, can't i just pay cash" He went outside on his cell to discover his insurance had not been cancelled.
They give us many sheets of paper to fill out the print is so tiny I can barely see. An autistic kid is screaming because his mother doesn't have the skills to deal with his behaviors.
The form asks me "what is your best pain?"
WTF?! I asked another patient he had no idea, so I asked the Japanese woman, they didn't know either. So, some man from the back (the so called doctor) says "That means the least amt of pain you feel!"
They take me to the back and I see the electronic bp cuff. I said "Please use the manual"
"What?"
"Please use the manual cuff"
"Don't understand"
She tried 5x and it's excruciating with the electronic cuff, she can't get my bp. Other arm, another worker, no luck.
Then doc runs in makes no eye contact puts papers on a desk and runs out saying "back in a minute"
comes back 10 min. later, get's the papers and says "just one more minute"
he comes back again, spends 15 min. reading papers never looks at me never smiles and never introduces himself.
I will share now some of what he said but not all.
Dr.-"How do you KNOW you have neuropathey, who told you that?!"
Dr.-"How do you KNOW YOU have arthritis who told you that"
Dr.-"Well, if you think you are just going to walk in here and I'm going to put you on pain meds you have another thing coming."
Dr._I need to have a long talk with your psych provider first!"
Me-What? I have no providers in Mountain Town, no one is serving me in any way.
Dr.-"Well, then who am I supposed to talk to about you?"
Me-(Isn't that your job to figure out if I have no health care in Mt. Town?)
He dismisses me and I clearly understand why people self medicate.
I call the cab company, he pulls into the plaza then leaves instead of calling me to tell me he's lost!
EXHAUSTING!
Monday, April 2, 2012
Harry Chapin - Greyhound
I'll never forget this song as long as I live. I was evicted in early June 2003, because the landlord said I was lying about their dog attacking me. Robin (a guy) came to get my stuff and the dog attacked him. The owners weren't home to see that now I have a witness. Robin kicked the dog in the face.
I was forced to take the Greyhound to Indiana where I had promise of only 2 weeks shelter. I wasn't comfortable telling r.m. that all I needed was a place til payday early July, in Baltimore, so off i went on the greyhound to IN.
It was absolutely terrifying to be on the Greyhound, and I will never ever ride the Greyhound in my life again.
I was forced to take the Greyhound to Indiana where I had promise of only 2 weeks shelter. I wasn't comfortable telling r.m. that all I needed was a place til payday early July, in Baltimore, so off i went on the greyhound to IN.
It was absolutely terrifying to be on the Greyhound, and I will never ever ride the Greyhound in my life again.
jim croce bad bad leroy brown
I live on the bad side of town, complete with a "junkyard dog" that I'm sure is the one Croce is singing about!
On the "bad" side of town
There are precious few acts of human kindness that are visible on the "bad" side of town, so I'll share this with you:
I have oatmeal at home, and enough money for a bus pass and a bagel today. Shortly after counting my change, I went to the bus stop.
It's a windy day, and I'm watching all of the trash blowing. One piece of trash, looking like a snowball, crossed the major street "courteously!" It crossed practically in the crosswalk, completing it's path on the sidewalk, where a normal person would likely complete their crossing.
Despite all the things I see blowing, I missed this! A man walked past me and said "Pardon me maam, but this wouldn't be your $3.00 blowing in the wind would it?" I said "No, it isn't but I sure could use it!" "It's yours!" he said, and handed it to me. I thanked him profusely.
Then I thought, "hmmm, maybe if i look in the direction that the wind is coming from, a 100 or 1000 bill will blow my way!"
I did just that, I looked east, another one dollar bill blew in front of me! I took the $3.00 and went to the pizza shop where I got a nice slice of pesto pizza. Then, a couple at the next table said "We have all this food left over and we can't take it with us. They asked a patron if they wanted it, and the patron said no.
I said, "I'll take it!" It was 2 more slices of pizza! So, this was a nice relief from what is largely alot of draining things going on in my life.
I have oatmeal at home, and enough money for a bus pass and a bagel today. Shortly after counting my change, I went to the bus stop.
It's a windy day, and I'm watching all of the trash blowing. One piece of trash, looking like a snowball, crossed the major street "courteously!" It crossed practically in the crosswalk, completing it's path on the sidewalk, where a normal person would likely complete their crossing.
Despite all the things I see blowing, I missed this! A man walked past me and said "Pardon me maam, but this wouldn't be your $3.00 blowing in the wind would it?" I said "No, it isn't but I sure could use it!" "It's yours!" he said, and handed it to me. I thanked him profusely.
Then I thought, "hmmm, maybe if i look in the direction that the wind is coming from, a 100 or 1000 bill will blow my way!"
I did just that, I looked east, another one dollar bill blew in front of me! I took the $3.00 and went to the pizza shop where I got a nice slice of pesto pizza. Then, a couple at the next table said "We have all this food left over and we can't take it with us. They asked a patron if they wanted it, and the patron said no.
I said, "I'll take it!" It was 2 more slices of pizza! So, this was a nice relief from what is largely alot of draining things going on in my life.
Sunday, April 1, 2012
"Strongest Drugs under the sun"
My 20 year old friend is a belly dance teacher and works at the local coffee shop. We both agree that dance is one of the strongest drugs known to man. About equal for me would be vocal performance.
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