Pas a pas the Cameroonian guy told me in Paris in 1983. Pole pole -- not sure what language that is , to mean slowly slowly, more pat as i can no longer take step by step. Hearing L.A.'s deeper, aging FRench accented voice calling me from France on the answering machine, I ache with longing for my old globe trotting self. I so wanted to start that project in Tanzania teaching papermaking, starting a microbusiness, helping. And i sent  crochet hooks to Famn pou Famn a Haitian microenterprise that will teach women to crochet.

While I live in a despair less abject, but profound. y peace is so fragile.

Last night for some reason i looked at my thermostat and it was blnk. i frnatically and foolishly began flicking lights off and on.  I still had electricity. How long would i remain warm without heat?

I pushed buttons and then it came on but something was flashing. I couldn't read it and thought of the sheet magnifier that i had in an Atlas but where was the atlas? And hen i looked in my file of all instructions and warranties and there was no info and then i remembered that in a kitchen drawer was another such file for appliance, so i found the  book, but that didn't tell me what the microprint flashing light said and i calmed myself saying at least this is happening on Sunday and your aide will be here tomorrow and push come to shove, you won't sleep, you will dress and
wait up and be warm.

But watching the flashing i finally figured out that is said replace batteries. ARGH! too high on the wall to be in my face and micro type ? Anyway, i had no batteries, but, good steward of
self that a past me was, i had one spare set of rechargeables (note to self, buy more) eneloops
and i set about charging them and told myself to calm down.

And i had promised myself to be in bed by 3, but didn't make it until 6 a.m.  but so it goes.

I was overjoyed to share info for one of my aide's other clients, an old guy looking for a garbage place...becausee my new garbage guy is less than one half the price of the old nasty place, which only took recycling once monthly and cost me $25/a month. Now i have
a friendly weekly recycling pick up.

And in other meek-inheriting-the-earth/i'm-mad-as-hell-and-not-going-to-take-it-anymore  updates,  I am free of the nasty nurse and the firm recategorized me which has me paying less than half the price for my service.

The Bed Story

My Bed was stuck on high.
it was the wee hours of the morning and i couldn't get in.
I spent an hour or so, looking for the manual crank,
moving the piles of tools and project bags around my bed.
Then the dressers and at long last, I found the crank, but weary from all the moving and
rearranging, I was fading.
The buttons didn't respond.
For months, if I held the cord a certain way, I could get it to move
up down, lift my head or legs, now, no longer.

I gave up on trying the crank at the head of the bed, then i tried the foot.
It's a fitted tube that goes over an inset piece...
and it kept popping out. There some positioning but finally I cranked the bed down,
my shoulder ached.

On awakening, just to see I pushed the buttons and they worked!
But that night, Sunday, returning to bed, I had to hand crank
it down again as the down didn't respond,
only the up did.

So what to do?

I was proud that it took me just one minute to find the Invoice
for my bed from 5.5 years ago. I needed it
because after looking on line for information
I needed more than the name of my bed -- I needed a model number and serial number.

There was none on the invoice-- the letters and numbers
on the invoice didn't correspond to anything on the
Invacare site, and I was unable to crawl under the bed to find anything.

But perhaps Invacare could help anyway--- the thing that wasn't working
was called the IVC pendant. It's a part and it seems on some models,
it's removable. When my aide came, I had her look under the bed
and we could see where the pendant entered the motor, but a couple
of cautious tugs did not remove it.

Invacare has a help/ answer site, that charges money -- that varies
with the urgency of your need, for the answer. When i refused to
pay, then a screen popped up, offering me the answer, but in a day.
( Two weeks later, I still haven't heard from them).

I called the firm that got me the bed. They told me that I could get the bed replaced within five years
-- of course this is 5.5 years, right on time, to not be able to get free help.
A lovely person there said that she would contact her supervisor to see if they could
find my patient sheet to get information on the bed model and serial number,
they would have to go through paperfiles-- which they might not have any longer as this information
was not in the computerized records. YEah we'ret alking back in 2006, they hadn't bothered to note
the model number or serial number of the bed.


I called the medical supply arm of my clinic who said they didn't know whether or not they did
that kind of thing, and it took four days for me to find out if it's even the kind
of repair they do.... i hate when i have to ask whether i can ask the question.

So then I had the idea of asking those who have electric beds. I called the
closest hospital who said they do it in-house and named different manufacturers
than mine. Then closest nursing home who said the same thing. The next closest nursing home
told me to call tomorrow to talk to maintenance -- their day was over. Over?
I was talking to them at 3:30. Turns out their day ended at 3 p.m. (YIKES! poor residents,
no wonder the place only had one star out of five in their ratings)

I called an electrician firm from the yellow pages -- I asked if they gave free estimates.
The phone answerer didn't know if they did ( their ad said they did, but my strategy for first contact is
to confirm simple information) and said she would have them call me tomorrow (This
was at 3 or so and they were already gone). BTW, they never called back.

I write this latest sorry saga this as a kind of reminder and rebuke, for all the "you need to advocate for yourself"
blather , to offer up my thanks for still having my mind, but my fervent wish to not have to use it
or my energy in this way, my wish to walk again, so I could work on stopping the tar sands
disruption, stopping the threat to our watershed that frackking poses, writing something
interesting.

I asked everyone local if they knew of any electricians, explaining that my bed wasn't working.
Maybe they still don't understand what paralysis means and how being able to get in and out of bed
without inordinate difficulty would be a nice thing, especially as I live alone.

But only one friend responded within 24 hours.... another lesson for me in who I cannot count on.

The universe heard my silent cries of anguish. When I was finally able to speak to the woman designated as the one who would know if the medical supply firm might even undertake repair
she said maybe but needed the information I had been unable to find or get -- the model and serial number.

She had a truck in the area she said and could be there shortly. Yes -- No -- I was stuck in bed and it would take me a least a half hour to wriggle /slide out and into my chair.

When the truck arrived, I explained to the wonderful woman that it was the pendant that wasn't working not the bed. Turns out she had a pendant on her truck and she crawled under the bed to undo
mine. Turns out it has a cable/phone type clip on the end that was lodged firmly in place...a little
screw driver pressing assistance and it was removed and a new one was placed it.

The model and serial number was on the leg of the bed, so I had that at last for future reference.
So after five days of fear and dead-ends, everything was done within 45 minutes of an answered
phone call.

And about an hour after this the lovely young woman from the distributor called to say they had been unable to find the information I wanted but that it should be on the leg of the bed, reminding me of how
little use my aide is to me, but I remain grateful for small things.

She at least gets most of what is my computer-print out with illustrations shopping list which is
better than five other people the agency uses.

I can't go anywhere or do anything but I can, once again, get in and out of bed with less fear.

Evil Nurse, Bad Help, Despair

I've been 'buked and I've been scorned as the song goes. And i had to take it. I have no recourse. The letter in progress:

Nurse S. invited me to send a letter to the Board of Directors. As she said this twice during the rancorous and upsetting visit she made to my home.

The nurse insulted, demeaned and threatened me. This after she asked if i had any concerns and i told her how i was left without food at Christmas time. My aid's car broke down, allgedly just before she was to come for me. HHS did not offer me any other aid or any assistance. If i had a private relationship with my aid, then i could have rescheduled or found some other time. As my relationship is with HHS - it was from HHS I sought a replacement. HHS did offered no apology, accommodation, orassistance.

She told me tersely (insultingly) that it is my responsibility to care for myself.
She told me that if I did not like HHS, then perhaps our relationship should be terminated. She said she felt uncomfortable about me using the services. That HHS has 300 clients and there are others who are in wheelchairs (I didn't understand what this was supposed to indicate.)

This conversation took place while my HHS aide was out shopping for me. I've said nothing but praise for my aide, which i reiterated.

Well how could I like my aide yet not like HHS, she asked? I reminded her that she had solicited my concerns, I had not begun the conversation.

I guess it was foolish to answer the trick question. I was invited to express concerns
and then brow beaten, insulted, demeaned and punished for it.

I was told that the reason no accommodation would be sought for me was because
all the other aides were "too stupid". These are not words that I have ever used.
I've expressed frustration that my shopping list for Wegmans, a computer print out with pictures as well as words , indicating amounts and with a running total
could not be followed by several of the substitute people sent.

One woman brought back two bananas when the list said 4 pounds. The total dollar amount
for this was around $2. This signified she understood little of what was explained to her about the list, the money before she went shopping. I described this as "functional illiteracy."

Another aide could not complete the list (about $70 worth of groceries and a mere 15 items) in the two hours allotted -- a task which takes my usual aide about an hour.

I don't understand why there is so much victim blaming in her and your organization's point of view. I use you because I need help. I am paralyzed and in a wheelchair. If I could shop for myself, I would. I used to in Rochester where there was paratransit and here, for the few months that a once-a-week bus was available, but as there is no paratransit in Corning and no grocery delivery services, I cannot. There are things I can't reach, light bulbs that need changing. This is the help I need for which I use HHS.

When I asked about the other aide for whom I had praise -- S -- she told me that S has left HHS.
____________________________________________________________________________

That's where i left the letter, which i will not send until or unless I can find someone else to shop for me or if they dump me.

I thought i was picking my battles. I've never ever ever complained about my aide -- though she's left me up shit's creek without a paddle more than once. But she is the BEST of a crap pile. This woman went off on me because I DARED to say anything was wrong.

Bad Nurse said the problem was that the only day i was available was Monday! I said I've NEVER said that, in fact I hate Mondays, I always lose service because of holidays and three day weekends.

I've only said I can only do afternoons. She said well that's my problem. And i replied - you cant grind me down any smaller than i am, I am already ground small.
I am disabled and can't be dressed and ready any faster than I can empty my bladder, do my bowel routine, change my diapers, and empty my urine bag. If that wasn't the case, then I wouldn't need to use your services.

WHEN I told her she was insulting and demeaning I would no longer speak to her -- and stopped talking. Totally. You think I'm stupid, she said. I said nothing.

She freaked and started apologizing. I told her she had the power and was oppressing me and then she got cute -- i don't have power, she said. I reminded her how she just got through telling me that if I was SO UNHAPPY With them, then perhaps i should go elsewhere.

Then she repeated it, in a babying voice, as if to fix or recast or reframe the threat and insult.

This was horrible and sickening. I stopped talking and started praying and chanting to myself,

I talked to her again the next day -- turns out she was supposed to get my current financial information -- to see if I still qualified for the subsidy that makes their inflated costs bearable, enabling me to pay $25 a week on top of groceries vs. $50 a week on top of groceries.

All this abuse and it's not for free!

So she called from the office to do what her visit was about. And if i'm still with them, I'll see her in 6 months when she comes to watch B in my house-- which is what i thought she was here for yesterday.

No Help Update

So a week and three snowfalls later, I've yet to get the list of possible providers.
I've made a dozen phone calls based on phone book listings. As I've said before, everybody here must be fully employed, because i can never find any help to hire. No returned phone calls from people who list themselves as snow removal. I would be more surprised, but this is the same agita I went through to find yard help (only to have an able bodied neighbor ask me who I used/ found (!!!)

Today I get an email saying that delivery retries had failed. Though i hit reply in sending the signed form, the agency idiot used an address that won't accept mail, unless I am added to a list. Somehow she sees the second failed message and sends me a message telling me to I need to "simply" reply to be added. This is the same address to which I had sent the signed form. (stupidity, cruel gamesmanship bureaucratic incompetence). More snow is on the way.

NO HELP FROM HELPLINE, NO HELP

There was an ad on tv for the helpline. National Helpline Day. So I called the Helpline to find help shoveling.

I had previously called Fatih in Action, that, without the great guy who has now retired, is less than helpful. 'We only have people who do rides,' the harried sounding woman said. This wasn't true when Tom was there, because they had arranged for people to come help me before. But Tom is gone.

The Helpline woman asked me about my location, zip code and age. When i said my age, she said i was too young to get help. 'I'm paralyzed and in a wheel chair', i said.
She sputtered and then raised her voice,"Why don't you ask your neighbors"!

This hurt and then infuriated me. If i could ask my neighbors why would i call the helpline? But more to the point, if i had decent neighbors, which i don't, really, I wouldn't have to ask them..
And after having identified myself as paralyzed and in a wheelchair, what more did i need to say?

As I began to say these things to the helpline woman, she hung up on me.

So I wrote a letter to the Institute for Human Services that I sent to three people, the head and a couple of folks in the 211 Helpline Department since they listed only names and not responsibilities.

The reply:
Thank you for contacting 2-1-1 HELPLINE with concerns about how your call last week was handled. It appears that the person who took the call was not familiar with the resource(s) that might have been able to assist you at that time.

I have done further checking into what is available and I have learned that NY Connects does now have a list of people who may be available to do snow shoveling. You may reach them at 607-664-2298 or 866-221-7324.

I realize that snow shoveling may not be as critical as the weather warms but if there is an organization that can provide the human services you need we will do what we can to assist with making a connection.

My apologies for our having missed this referral when you called.

Ms. X

Thanks for your reply.

It wasn't only the lack of resource identification --- it was that blaming-the-victim tone that made the experience so searingly memorable.

If my/our neighbors helped, there would be no need for social services, so to my mind
it was obvious that I wasn't being assisted, which is why I called.

A simple "I don't know" would have gone further than the turning-the-table tact.
I know something is wrong with me. I am paralyzed and in a wheelchair. I need
no further reminders of my disability.

When I called the number you've listed, they identified themselves as Office of the Aging/RSVP. I asked if they could connect me to NY Connects. They did. However, as this was a bit confusing, perhaps you could, in future, give the direct dial for NY Connects, or if there is none, ask the phone answerer to include that name among
those that they say when answering the phone.

Regards,

Anyway, I connected to the designated folks who said they would send me a list of possible people. They e-mailed me a form to sign, which i did the same day and e-mailed back. They said they would send me the list of providers the next day. It is a week later and I STILL don't have the list of possible people. I've emailed them twice and gotten no answer.

I was told about a woman who does things and called her. She was leaving town for the holiday. She gave me the phone number for a college kid, who came on Saturday and did a half ass job of removing the now icy snow from the most critical place -- at the base of my ramp... It cost me $10.

My front is clean and dry and there is still not a clear path at the back for me to get out.

He was nice enough and told me he liked classical music -- I confused him by saying what was playing was opera and that it wasn't the TV but the radio and that it comes on every Saturday afternoon.

So much effort for such a little result. It rebreaks my heart that I thought the lesson, if any, was about asking for help. But I exhaust myself asking, trying to get, then still have to pay and don't get the result I used to be able to get myself, in half the time, with no expense.

Hurry, spring.

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

He's WORKING ON GETTING ME AN IN HOME THERAPIST

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).

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.