Thursday, October 07, 2010

Dr. Visit Brings Hope

This is the first time in 4 years that I have spoken to a medical professional who understood everything, it seemed.

Let's begin with access: his nursed pushed me along the carpet --- carpet is a shoulder buster and most folks just watch me ache, creep along, and struggle.

His office had a table that i could transfer to. First one I've seen in four years.
He ordered tests no one else has suggested:
bone density
pulmonary function
ultrasound of kidneys
because sitting in a char affects all of these


When i pulled out the STANDER literature he praised me-- yes that was something he envisioned me using to prevent osteo_____ something.

I told him about the Flexiciser, he waited for me to follow him (uber points for that, too, treating me like I am a grown up who can go from point a to b) and showed me something VERY similar, a leg moving machine.

Then show me the heated hydro therapy pool that i could be lowered into--- if i could get transport there, which i can't with regularity SOOOOOOOOO he said our goal is to get me driving and help me transfer into my car....

Why don't all doctors have dentist chair type tables? In that they go low enough for someone from a wheelchair could possibly get on.

He said where we are is backwards and that he had brought that accessible table with him.

I think i love this guy-- who SHOOK MY HAND. which just reminded me how i have not been treated well at all, but maybe this time I can really be on the road to help and healing.

He praised me and celebrated me saying he was delighted to have a patient who was motivated. ME? YES!!!!

He had read my file and knew i was a vegetarian and food conscious and so understood my desire to lose weight was about raising metabolism, NOT telling me about not eating stuff that hasn't touched my lips for 40 years.

I left with 3 appointments already set up for me--- this has NEVER happened before....
my last blood test was at my OWN insistence. I think I've found a REAL DOCTOR.
My bus driver, who I like a lot (but hadn't been getting because his firm declined
medical rides for a time) knew this doctor and also praised him.

All praises for hope and change!


A total instance of answered prayers, because I've said the same things to the same human beings,
so frequently, it's like having a stand up routine. But who listened? No one, really.

This is my fifth year of TM and my third year home and only now did my neurologist refer me to a
physiatrist. The PA and GPs could have.

Last time I had PT in 2008 and as devotedly as I went and adhered to it, I was disappointed. I asked the therapist about other devices and other tools ( a stander, leg machine). My work there was mat work. Because that's all they had for me.

It turns out that was the SATELLITE office for this BIG facility. It makes me want to cry.

This therapist was known to the physiatrist. When I was BEGGING, bringing material,
and explaining what I thought I needed, the therapist and facility said this is all they had. Which was NOT true.

You can't ask the question unless you know the question to ask. I did a good job of
guessing, but in a system based on physician referrals, unless you're wealthy
and can purchase in home care and equipment, you are at the mercy of others whims
( or level of attention).

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.

Wednesday, August 25, 2010


so a message is left. my aide won't be here next Monday. Wish she had told me on Monday so that I might have gotten more groceries. They planned to send someone who I thought was horrific and inefficient. It took her two hours to shop from my list that is printed out with pictures, prices, weights, measures and locations and still she left/forgot
critical things and did strange things with quantities like 2 bananas instead of four pounds.... not forgiveable because they provide me with such sustenance and tummy bulk
so i felt hungry for days without my daily banana

My nutrition will suffer, but if I eat every other day and buy one order of Chinese
take out, I will survive for a week without groceries. I am so glad that I found the
dry goats milk online and ordered it. I will ration the fresh/wet for smoothies. I will ration the cocoa and see if i can find it, too, cheaper online. Then i will have goats
milk and cocoa hot chocolate for the cold nights that have already arrived.

they are still working on the house. This is the second week. it hurts to be up after only 5 hours sleep, but try as i might i can't get myself to sleep any earlier -- here is is, 7 pm and i am more awake than i was at 2 p.m.

Still they are very kind and gentle young men who tell me what they are doing who explain the process and i am grateful for my shell to be insulated, filled, buttressed against the cold.

Saturday, August 21, 2010

No Help even with Aid

I was losing my mind. another week of chirp beeps-- cheeps, shrill birdlike squeals.
I had endured them the week before as the smoke alarm died, out of reach.
My aid comes once a week and so i just held on, stayed up late, played music, radio, TV to cover the sound.

So the first thing I had her do was find the sound's source-- it was the basement-- and then the fun
began. She said there was no battery. There has to be--- it is squeaking-- the sound of battery dying.
So she went downstairs again and said there were electric wires but no battery. So i had her take a picture (o the joy of digital cameras).

She did and when i looked at it I said-- this looks like a case that you can open.....
To shorten the long story I ended up calling the fire department. I only have her for two hours once a week and I needed groceries. She annoyed me as she named
various men I could call. I've never called anyone other than
the plumber for repair, nevermind having to call someone to replace a battery?!!! This is the hell of being wheelchair bound. That I can't do what i once did and am dependent on people who can't do what i once did for myself.

Wednesday, May 19, 2010

KEEP THE Lovely Firemen

I'll just post the letter I wrote:

I just heard that the Fire Department is slated to lose 7 people.
This is a travesty.
I have had several emergencies and the ONLY AGENCY that responded was the Corning Fire Department.

The latest scare for me was the loss of electricity on Saturday, May 8, 2010
I called 911 and told them the story and they sent me to the police.
When I spoke to the police they were rude and dismissive, "we're not the utility", the
officer snarled (!!) I told him that 911 told me to call. My bed is electric, and while i finally got out of it, I faced not being able to get back into it.

So I called the utility who told me no one else had called (!!!!!) and perhaps i had done something to make the electricity disappear!! It took hours for other folks to call.

Contrast this hostile and indifferent response to the Fire Department: they have a hot line to the utility, asked if I was okay, assured me that if i needed help i would get it--- as they have so many times before.

When i was able bodied-- they caught frightening bats for me. When the house was new to me, one of the cats knocked over some unnamed liquid in the basement -- a frightening chemical spill. The fire department did the possibly hazardous waste clean up. When I thought my ceiling was falling down, it was the fire department that answered my call. When i thought i was having a heart attack, the fire department beat the ambulance to my house. When a pipe burst and I couldn't reach the shut off, the fire department saved the day-- swiftly, with kindness.

Sad to say, 911 and the Police are not as compassionate, on point or as speedy as the Corning Fire Department. Please join me in telling our representatives and the City Manager that this vital, critical and skilled service needs to remain!

Saturday, April 10, 2010

Picking Poor People's Pockets

I so want to relate the backstory, but I'll restrain myself slightly and start with the current one.

The metal panel that acts as a container/or guard that keeps the flesh from being scrubbed and burnt off the tender part of my thighs is cracked from its thin connector
on one of my arm rests.

Now when my tires were replaced and they rubbed against the armrest/guards I thought to enable my suddenly incredibly difficult mobility by just flipping the arm rest back or removing it. But since i can't feel, it wasn't till the end of a day of this that i felt dampness by the side of my leg and saw bloody tire tracks branded on my right thigh.

When i had asked the tech how much it would cost to replace the part, he told me
$200, not including labor.

After going to the dentist and having to struggle to put the whole assemblage back together, I determined that i was ready to go hungry a bit-- it's warmer, so i can eat less-- to buy this part.

Turns out it's $70 --- multiples less than $200.

Lest you think maybe he thought it required the whole arm rest or some such---
replacing the whole arm rest is $135.

Now back story -- i said the tires rubbed when he put them on, that it felt tight.
When i called the base because it hurt me to wheel around, they were going to
charge me mulitiples of what it cost for him to put the tires on -- I think the estimate was over a 100, just to assess/ determine a solution...

Now i know them as liars and thieves and pray that i need no repairs and if i do, i can effect them myself or find another supplier. (i did find another supplier
in the next city, but they never bothered to return my calls and i've just built up muscle and shred space on the new tires so that i can wheel a bit more freely)

I am awash in relief and hurt and anger.
I would have done this six months ago. It is wearying that every SINGLE thing I am told must be examined, investigated, can't be trusted..... like my finger (another story about avoiding unnecessary surgery).