Sunday, September 26, 2010

Useless Overseer

the useless overseer aka nurse comes tomorrow to offer the veneer of aide. i hate it. i will not be nice this time as it wastes the mere two hours of help i get once a week.
this is ridiculously obscene that i am required to spend time while she asks questions about needs she cannot address.

I only get help once a week for two hours. ohter than that i am left to starve or scramble for myself.

i will tell how furious i am about two weeks without help after the day i not only had a light shopping done, but with 45 minutes to spare, the aide told me she was not allowed to go home early and had to call. When i said yes,call... then the workers
decided to leave.

all this had subsided but the annoyance of seeing or dealing with a nonfriend, non help
form pusher is just unbearable administrivia.

deep breathe.

Tuesday, September 21, 2010

Pain Remains

hell to be up so early. I was unable to sleep before 4 something am and awoke at 8 to get out of bed at 8:30 am to wash and be dressed by 10 for the bus that came at 10:30 for the 11 am appointment.

Six weeks without meds for the ravaging pain. You don't have to apologize the bus guy said. Yes I do, thanking him for his kindness after the Dr.'s office told him it would only be a half hour and I was there for an hour and twenty minutes.
Purple pen, pad, crochet hook and yarn helped me wait for $500 attention.
She wrote a script for Marinol no Sativex yet in the U.S. and hopefully my naltrexone will arrive in a couple of days from the city--
there's no place reasonable closer. The pharmacy in Canandaigua charges twice as much, the one in PA charges three times as much (60 vs twenty) to grind up one pill to make my many.

I'm disoriented from fatigue.

Monday, September 20, 2010

Too Happy

I remember the older women who told me I was too happy. A couple of peers told me this too. All I can say to that other Akua is you were right to rejoice. I thank you for your
joy because you knew how good life was for you. I speak to you from a comparative hell.
I applaud your gentleness and compassion, because you had many things I don't have:
health, your mother, your father, your bright dreams and determination to change the world. You could sleep on the floor, walk from Brooklyn to Manhattan, ride your bicycle,
carry your instruments on the bus and subway, eat florentine apple torte and caht with the smart Argentian Italian lady, be warmly greeted and served by the old Italian lady
who rocked slightly as she walked and graced you with a smile. You were right to be happy and show it, because they are all gone now and your only solace is that you loved them all, you loved your shimmering life, the songs you sung as you walked those long city blocks about your loves and your struggles, becuae now you can no longer walk or dance or hang out or play or see any of them ever again.

Pain With No Gain

For the 4th time my aide forgot to get me plastic bags. since i'm in a wheelchair and can't carry things, as my hands are needed to propel me, I need plastic bags to carry
waste, spent cat litter, garbage, to the garbage can.

This time I sent her back to the store to get them. She shops with a printed list with pictures and location of each item, cost and a running total. PLASTIC BAGS was hand written in caps with exclamation points for the past two weeks at the top and bottom of the list.

Sending her back to the store to get the bags, because I have none, now, because though it is the 4th time she forgot, she was gone for two weeks. I had six weeks worth of backup and struggled for the last five days to withstand the sstench of bags I had to stuff and keep around to use.

So essentially I spent another $50 to get a mere $51 worth of groceries because several things I wanted were not in the store.

If there were another service, I would use them, but these folks are the only game in

Give me strength.

Tomorrow i see the doctor who has left me in pain for six weeks by refusing to renew my script until i see her.

Wednesday, September 01, 2010


I have exhausted civic, legislative and human resources pleas. I am anxious and upset. I want to avoid calling an ambulance and going to emergency just because i can't get to the doctor. I have said all this to my physicians who don't make house calls, won't renew my script and don't care.

My neurologist won't renew my scrip because i haven't been to see her in a year. My GP said she won't authorize the med. Where everyone else takes 4 or 5 meds i take this one that is cheap and has no side effects and helps me manage pain.

My next appointment with the neuro is the 21st. I had one with her last month, but couldn't get transport for the appointment. The office offered me an appointment for 10 am on Thursday but that was undoable-- the only possible times are from 10 to 2 for transport so there's no way i could be at the office at 10 and the office offered me no leeway -- like a 10:30.

Can i live for a month without it? Hoping that when the time comes, that i can indeed get a ride to see the neuro on September 21st. The system has changed so while you dare not ask the same week or next day, knowing a month a head of time doesn't guarrantee that when the time comes, you will be given a ride....

perhaps i should call the hospital and say i'm a nonemergency contemplating coming to emergency because my doctor won't give me the care i require. My pain and anxiety are great.

This is all so frustrating, money wastingly, ridiculous.

For the want of a nail-- if i had a treasurer, i could start the non profit and solicit the tax deductible funds to create paratransit. or my city could provide a taxi
or the local store could deliver food anything could make life better and nothing is budging.