This is why I don't like to make New Year's resolutions: there are so many distractions to keep me from fulfilling said resolutions.  I know I should update more often, but then I have to manage my bills, my emails, and frequent naps.  Then there are the phone calls for doctor's appointments and prescription refills.  Not to mention the doctors' appointments themselves, especially if I have to take Access-a-Ride.  If I have an appointment in Manhattan which takes a couple of hours, I am literally out of the house for at least six hours, between the cushion I allow to arrive early at my destination in the event of delays, waiting time for my return trip, and the return trip itself -- especially during rush hour traffic, and including other pickups and dropoffs.  In theory, you would think I could use my ipad to field emails and write articles, but in reality, the wheelchair tie-downs don't keep me steady enough, and the ride is so bumpy and jumpy that I can't even read.  The only thing that works is listening to an audiobook.  I am often too tired to concentrate on even that.  When I finally get home, I am pretty wiped out and often starved and need to eat something.

New Years Eve I went to the annual get-together at my friend Nancy's house.  She has a bunny rescue out of her home in Great Neck.  Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway.  Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people.  Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me.  Now she looks forward to going because the food and company are so nice.  It takes two  to transfer me into the car however, and Diane was luckily up for the task.  So she worked that night and came with us.

The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight.  And on Thanksgiving, I rode in a car for the first time in almost 11 months.  I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October,  Thanksgiving,  Christmas and New Year's Eve.  In 2012,  my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas.    I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat.  In the best of times, people move on.  The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none.  I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair.  So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.

Thanksgiving, Manual Broken Transfer Chair

Went to my first endocrinologist appointment the day before Thanksgiving.  He is a cold, Russian local doctor in Rego Park, but he seems to know what he's doing.  My thyroid sonogram revealed a small nodule and I needed to see an endocrinologist.  I saw online that Weill-Cornell has a wonderful endocrinology department so I emailed my neurologist, Dr. Shtilbans and asked him if I should get myself in there.  He said it wasn't worth traveling over the river; he suggested I see the local doctor and if it turned out to be something complicated, then we could see.  And there was a side benefit:  my aide and I walked [well I rolled], and I got to be out in the neighborhood and pick up a bottle of wine to bring to Thanksgiving.  I don't get to roll around the neighborhood too much, because the aides who work during the day don't like to take me out for some reason.  They will do what errands I need, but they prefer to do them alone.  So, visits to local doctors are great excuses to get me out locally and I can see what's doing in the 'hood, aside from my lunches with Judy and Louise.  So, getting back to my thyroid, the doctor feels a slight goiter, which he is trying to shrink with medication [25mcg of Levothyroxine].  It's kind of a pain in the butt how I have to take it -- first thing in the morning with water and then I have to wait 30 minutes before I eat breakfast.  This is a pain with my aides' schedules, because the night aide gets me up at 6:00 am and can't give me breakfast until she has to leave and then the day aide has to clean the breakfast dish.  But oh well -- change is good.  Later on in December, I have an appointment with a local nephrologist [kidney specialist] because there could be a connection between low potassium and kidney failure -- either low potassium can mean kidney failure or low potassium can be because of kidney failure....ugh, I don't want to make myself crazy.  Dialysis is something I don't want in my future.

Thanksgiving was nice.  I went to my sister's house and my aide agreed to come along. The food was great and the company was fun.  There was one glitch, however, that caused me a lot of anguish later and I didn't see it coming.  I have had a manual transfer wheelchair on loan from the ALS Association for about 6 years and both footrests are broken at the point where they attach onto the chair.  So I went to Thanksgiving with no footrests.  This meant that my feet were hanging down for about eight hours, and when I reached home, my legs were weak.  I also didn't sleep all night because my feet were hurting all night and they were freezing cold.  And, as usual, when I have to sit in the manual transfer chair for so many hours, my whole body hurts from not having a headrest and the wheelchair being so uncomfortable.  It is only for short transfers and not for sitting for long hours.  But, since my sister's home is not the least bit accessible and I have to ride in my brother-in-law's car to get there, my custom-fitted motorized wheelchair is not an option.

And now there is the question of the loaner manual chair's repair.  The loan agreement from ALSA states that I have to keep it in good working order and return the equipment when I am done in good condition.  That means I am responsible for the repair.  There is a place nearby called Gem Surgical Supplies but I have to see about pick up and delivery.  Otherwise, I have to wait until Louise rents her zipcar at the end of the month to drop it off, and then wait until she takes a zipcar again several weeks later to pick it up.  In the meantime, I pray that my motorized wheelchair doesn't break down, because then I would have no backup manual wheelchair.  As a matter of fact, I have been looking at manual transfer chairs for me to purchase and I can get a simple one for about $600, or a much better one with a headrest, and that tilts back, for about $1400.  Then I think: hmmm, I go to the family maybe once [at most twice] a year-- in fact, for 2011, I didn't go at all.  We need the manual chair when I do the Long Island Walk for ALS [which I didn't even do this year due to lack of team interest] and for New Years Eve when I go to Nancy's house in Great Neck [provided Louise can go and I have an aide who cooperates with transfers], so is this a smart investment?

I'll tell you what a smart investment is: new shoes.  At my sister's house, everyone was teasing me about my "Frankenstein shoes", but Medicare now only pays for custom shoes for diabetics [which I don't have -- yet] and they will cost $800-1000 out-of-pocket.  I still have to calculate my NYSARC trust account to see if I can submit the bill, and hope the NYSARC trustees approve the expense. Anyway, not only are my Frankenstein shoes falling apart, but they were made for the old braces and don't really fit these new braces.  I had to stop myself from saying to everyone at Thanksgiving "Would you people like to donate to my shoe fund?"  Ironically, I think it's items like my funky shoes that embarrass people from being seen with me.

Post Hurricane Sandy -- Reflections on the "American Dream" and Post-War Building Boom

Well, I have to say [blushingly] that I have been incredibly fortunate through these two atorms -- Hurricane Sandy and the Nor'easter.  Not only did I never lose power or heat,  but once again I am reminded of the awesome group of aides I have, who managed to work out logistics among themselves to get to me and never leave me without an aide.  It helps that two of my aides are a mother and a daughter who live in the same house, but the third lives in Brooklyn, and has a husband who was able to drive her over.  My fourth aide is spending a month in her home country of India.  She left a few days before the storm, and is coming back a couple of days before Thanksgiving.  I'm sure she is watching the news from India and thankful she managed to get away at the right time.

But, as someone who always volunteered for causes like AIDS, cancer, MS and a lot of other charities, it's very tough for me to sit and watch what is happening and feel so helpless that I can't do more to help.  Compounding this feeling is the fact that my family and friends in Long Island have not had power or heat for almost two weeks, and might not get it back until Thanksgiving.  My sister and her family have a generator, but even people with generators have a hardship getting the gasoline needed to run them.  I am hearing that my 84-year-old father is in his home five minutes away from my sister, also with no power or heat.  I am told [I can't get in touch with him by email or telephone] that he prefers to stay in his own home [which I totally understand].[update: my dad emailed me the afternoon of Sunday, November 11 to say that the power came back on, and that he spent whole days under the covers in bed]    And my good friends and their almost-three-year-old twins are also suffering. I really feel for my hometown of Long Beach, which is destroyed, the Jersey Shore and the Rockaways. As I write this, there are still homes without heat or power almost two weeks after the storm.  Some homes have generators but there is a shortage of gasoline to run the generators, and gas rationing is in effect in New York State.

A lot of Long Island communities -- especially those near the coastline -- were built on landfill or marshland, and I think the weak foundations just gave way in combination with the low elevation.  This includes a lot of NYCHA housing projects, one of which I spent my childhood in.  They were built to house World War II veterans like my dad, and their young families.  This storm and the destruction it wrought, had me thinking a lot about this "American Dream" we have all been chasing since after the second world war, the dream of marriage, family, and eventually home ownership.  The communities which sprung up on Long Island were in response to that dream and the supply couldn't keep up with the demand, and so the older established communities had to give way to communities built on landfill and marshland and -- in some cases -- on top of dangerous chemical waste, leading to the epidemic of cancer cases in places like Nassau County.  This all makes me want to read more about the history of Long Island and Staten Island.  I remember when we used to come out from Brooklyn to go to Nathan's in Oceanside when I was a child, and there was a woodsy forest behind Nathan's.  And where I am living in Rego Park, apartment houses were built on farmland, although Flushing Meadows Corona Park was built on a big garbage dump, which you can see in the movie "The Great Gatsby".  Kind of creepy the way that Robert Moses oversaw the construction of all the highways around my neighborhood just to bring people to the 1939-40  New York Worlds Fair, which took place on a garbage dump.

Anyway, I have to go see an endocrinologist about the nodule on my thyroid.  And now, I am scared shitless because Brooke Burke Charvet, the hostess of "Dancing with the Stars" also had a nodule on her thyroid and was diagnosed with thyroid cancer and has to have a thyroidectomy.  I am keeping my fingers crossed and will call the doctor I was referred to, first thing tomorrow.....ugh.

Pete, Rudy and Vinny Are My Angels ; Kudos to John Liu

Kudos to NYC Comptroller John Liu


NEW YORK, NY - City Comptroller John C. Liu stated the following on the approval of the "Taxi of Tomorrow":

"The failure to make the entire fleet wheelchair-accessible is a wrong-headed decision that should concern all New Yorkers, not just the current 60,000 wheelchair-users ihould have beenour City. People can become disabled at any point in their life. Perhaps if the Mayor required the use of a wheelchair he would see this issue differently."
Background: Comptroller Liu's testimony to the Taxi and Limousine Commission: http://comptroller.nyc.gov/press/2012_releases/pr12-09-100.shtm.

When the ALS clinic staff at Cornell met me at the door at my appointment on September 14, they had already heard from me for months about my wheelchair.  The rep of the vendor kept promising me that he was "working on it" and very soon, all my wheelchair problems would be over.  At my June appointment at the ALS clinic, the rep wasn't present and I learned he had left the company.  It all made sense.  When some people know they will be leaving a job, they often leave loose ends hanging.  I was assured that the company had hired someone else and I figured it would take time for this new guy to clean up the mess left by the old guy.  So when I came for my next appointment on September 14, Jenn from MDA informed me that the following Monday [September 17], I would have visitors to my apartment -- Pete, the new vendor rep, a man from the wheelchair manufacturer, and Pete's boss.  In the meantime, Pete was in the clinic that afternoon and he spent a lot of time with me, the occupational therapist, the physical therapist, and my wheelchair.  Together we all figured out what the issues were.

 So the three men came on Monday and promised they would get the wheelchair to a more ideal vehicle for my needs, with a single footrest that lifts up, rather than two single footrests that were constantly breaking and came out to the side like wings for me to stand.   They brou ght the wrong footrest.  So they had to take the wheelchair away to their shop overnight and I had to use the manual transfer chair.  This means that I couldn't move on my own and there is no headrest, tilt or recline.  They promised to get the wheelchair back to me by 10:00 am.  Of course the next moning came and went.  With every passing hour in that manual transfzed er chair, I was uncomfortably waiting for the chair to come.  It finally came with a technician at 2:30.  I was not the happiest camper, but so relieved to have it.  One thing they did as a result of my joking around when they asked before they took away the wheelchair, "Now before we leave, is there anything else we can do?" and I said "If you can make this wheelchair narrower, I would be very happy".  It seemed that the wheelchair itself was no wider than the old one; the armrests were wider and the part that stuck out from the side footrests made the chair wider.  So I was ecstatic when I got the wheelchair back, that it fit into places it hadn't, including under the table that holds Chelsea's bunny cage.

Untill four hours later-- at 6:30pm when I did what I have always been instructed to do  when straightening myself in my wheelchair -- I tilted back and pushed against the footrest.  It so happens that the footrest was in the "up" position, and when I pushed down on the footrest, I heard a click like something breaking.  And I couldn't get the footrest back down.  I could get out of the chair but couldn't transfer anymore.  So back in the manual transfer wheelchair I went.  In the meantime, we found a bolt on the ground, and the bolt had snapped in two. Great!  No footrest again and I can't transfer, so I have to be in the transfer chair.

The vendor couldn't send a technician until Thursday morning.  The tech got he footrest down again so I could transfer and use the motorized wheelchair again, but he told me to fold the footrest up and not use it until they came back to fix the bolt, which shouldn't take long to receive because it was still under warranty.  Apparently the bolt that snapped off is a safety measure to get me to avoid banging the wheelchair and the footrest and thereby damage the wheelchair frame.  Good to know, but too late.  So far I haven't had use of a footrest for a whole month and it is really hard.  The neck pain I have been having, is starting to radiate to my upper back, and my patience is wearing thin.

Thanks Doc, for freaking me out! and a summer wasted by dangerous air.

First of all, my Medicaid home care is fine.  When I received a notice to come for my fair hearing, I got in touch with some disability activists to see if someone could come with me.  Someone from CIDNY made a phone call to learn that I was renewed in April.  So I didn’t need to go to my fair hearing.  Nice of them to tell me.  What they did tell me in early August is that I have to pay Concepts [technically my home care agency] $207 surplus income.  I pay all of my surplus to the pooled-income trust, and they use it to pay bills, and I wanted to fight this but I am so tired of making relay calls, that I just let it stand, even though that’s more than $200 that can buy me things I need.  Everyone is so busy that I hate to ask people to make these phone calls.  I had the idea to hire an assistant twice a month if I can handle the money.  It would mean four hours twice a month at $12-15 an hour off the books.  Suggestions welcome. It would have to be someone who could make phone calls, clean some things the aides don’t, file papers, and even accompany me to go out sometimes.

Check out this blog   smartasscripple.  But only check it out if you believe that people with disabilities are entitled to complain and be snarky about it.  He has no tolerance for ignorant people and a society that still -- 22 years after the passing of the Americans with Disabilities Act of 1990 -- falls very short of treating people with disabilities like the rest of society.  As for me, I am tired of trying to educate other people who still let people in our presence talk about me as if I were somewhere else.  Recently, my aide and I were in the T-Mobile store.  I still haven’t decided if I want to leave T-Mobile and go for an iPhone, or take an upgrade with T-Mobile and go for an Android phone.  So I was talking to the salesgirl with my iPad and yet she still talked to Indie [my aide].  So Indie said “Talk to HER”.  So she started screaming and I calmly said with my iPad “Please speak in a normal volume.  I am not deaf”.  You cannot govern common sense.  “It’s the right thing to do” doesn’t work. People are very short-sighted, and I don’t remember if I was any better when I was able-bodied. After all, I grew up in a time where we called people “deaf and dumb” and “crippled”.  And so children are best, as well as African-American and Latino people. The last two groups I attribute to more familiarity with illness or disabilities either because they tend to be more in the health care fields, or from poorer neighborhoods where there tend to be more people with disabilities being taken care of by their families.

I still continue to enjoy my largely vegan [except that I eat fish] diet and I feel good.  I like to taste various healthy snacks, and want to start blogging about it.  My favorite thing lately is a sprout powder by Sprout Living.  I mix the powder in with my banana/berry smoothie in the afternoon, and it has gotten things moving.....I now take 2 potassium pills every day because my potassium is still low.  Potassium is very constipating......my sprout powder fills the bill.  I found out it is really easy to sprout things like beans and seeds in my kitchen. I have an aide who works mostly at night and she says she knows how to do this so she will help.  Also, trying out new healthy foods and snacks has become a hobby of mine, so I am going to start another blog about that soon.

I didn’t update in a while because this summer has been very up and down for me, and also my primary care doctor made me crazy in June, saying she heard fluid on my left lung and I should get a chest x-ray, which I did. I figured that maybe I had a touch of pneumonia, although I felt okay, save for a little more sleepiness than usual. So I had the x-ray on a Wednesday and got a message on my voice mail the following Monday to call the next day regarding my chest x-ray [they called before closing-- thanks]  I hate this; if its okay, just say it on the voice mail.  I called the next day and the nurse told me the x-ray came out blurry and they needed me to have a CT scan of my chest.  That’s right ---- shoot me with more radiation so eventually I get cancer.

The next week, I had my appointment at the ALS clinic at Weill-Cornell and discussed this lung thing with the team.  They referred me to a great pulmonologist -- Dr. B.  In the meantime they all said I could decide whether to do the scan or wait to see Dr. B first.  I said oh what the hell, let me get the damn scan so Dr. B will have something to study. Again, I get a voice mail to call back regarding my CT scan.  I call and the nurse tells me there is a “node” on my lung and I now need a CT scan of my abdomen and I begin to freak out.  I ask why the doctor is ordering a CT scan of my abdomen and I get :
“I don’t know. She didn’t tell me”
“Well, what are you trying to rule out?”
“I have no idea”
I told her I want facts and to have the doctor call back.  I’m told that won’t be until tomorrow. Great, I’ll be out tomorrow from about 11 until about 4pm.  She said she would relay that to the doctor, and evidently that slipped by because I came back and there was a voice mail the doctor left at 2:15.  I vowed to not chase her down anymore but she called the next week.  Abdominal CT scan was a mistake; it was supposed to be thyroid sonogram  [close but no cigar-- different test and different body part]

The upshot is there is a “spot” of .8 centimeters, which Dr. B says if we were to go out and take scans of the general public, most people would have spots [on the report, they called it a “nodule”].  Dr. B works with the ALS doctors so he said the “fluid” on the left lung is a result of the weakness on my left side which causes me to lean to the left [the wheelchair company promised six months ago to put something to correct this among other things -- don’t ask!!]

Next chapter is that there is a four centimeter “nodule” on my thyroid and the doctor of course wants a sonogram. I don’t know if I want to do that.  There is no radiation, but there could be an injection of dye.  Can’t she just check my thyroid with a blood test?  Dr. B says this is probably “much ado about nothinng” too.

On June 7th, I finally saw High Line Park with Judy and Louise.   It’s really special but wear a hat on a sunny day because there is no shade.  Then we went to lunch at Chelsea Market, which I used to visit every Sunday with a certain man I wasted three years of my life with, but haven’t visited the place since late 1999.  Boy did it change!!  And the weekend before, my dad took me and my sister’s family to Ben’s Best for my annual birthday dinner

The best surprise came on the last Sunday in June when my cousin Rich Vogel came to town from Portland, Oregon with his two kids [18 and 21], Mitch and Madisen. As luck would have it,  they picked a weekend of over 100-degree weather, which people from the Pacific Northwest never see.  Madisen was sick from the heat and stayed back at the hotel when Rich and Mitch came to Queens and we met at Ben’s Best [again, yes], so they could have real New York Jewish deli food.  We reminisced about growing up together in Oceanside, where Rich learned how to make frog legs working at Nathan’s. And Rich reminded me about the many times I substitute-taught at Oceanside High School and had my sister, Rich’s sister Peggy and Rich and all their friends as students.

Last month, I went to Red Mango twice with Louise.  I have become an addict of Red Mango frozen yogurt.  Also, I went to the Queens Museum of Art with Judy to the “Caribbean: Crossroads of the World” exhibit. This super-hot summer with 100+ degree days was a bust for me.  I love that weather but when you can’t go to a beach and in my case, no further than the front of my building, it’s hard. Except for the two outings mentioned, I never got out in June, July or early August.  Also, work was being done on the exterior of my building and there was dirt and debris flying, as well as scaffolding around the building, so I was stuck inside because the air outside was too dangerous. What a waste!

Wow, I absolutely don't believe it's been so long since I've posted, but there is so much going on, mostly annoyances of all sizes.  I am still waiting for a date for my "fair hearing", which doesn't guarantee reinstatement into Medicaid.  I'm trying to see if Concepts can help.  But they keep referring me back to the very supervisor at CASA who is covering up for the caseworker.  Nevertheless, I am going to give her a call.  Mind you,  I owe my life to relay calling, but a relay call takes so much longer.  The people at CASA claim they don't have email, but I find that hard to believe; they probably don't want to give out their email addresses because emails are so easy to hold onto and so easy to use in a "he said/she said" situation.  But what they don't realize --shhh -- is when you make a relay call, the transcript of the call can be saved.  Anyway, a well-meaning friend said she thinks "7 On Your Side" or "Shame on You" or some other broadcast ombudsman should be contacted, as well as local political figures. I replied " great idea. Care to make some phone calls for me?"  Of course, everyone tells me how angry they are for me, they're sending prayers,  keeping me in their thoughts, etc. etc. etc. , but of course, none of this means tangible assistance.  I am trying to see if the disability activists can find a "pro bono" attorney. The social worker at the ALS clinic asks what she can do to help, and so I do have people in the field of health care who are expressing concern, so we have to see if this is more than lip service.  I am "cautiously optimistic", but still scared. As for the media, those television people rarely go after government agencies.  They are more into busting the sleazy contractor whom you paid in total up front, did half the work,  and never came back, won't return phone calls, ignores your emails.  My greatest fear is to never get a "fair hearing" date and suddenly be informed my Medicaid and home care have been discontinued.

I had two inexcusable "adventures" with Access-a-Ride last week that exhausted and pissed off my aide and I.  I am immensely grateful that New York City has this service for people with disabilities, both permanent and temporary.  But, few people understand that it's not a door-to-door limo service.  You have to call one or two days in advance of the trip, and you can only do this between 7:00am and 5:00pm.  So if your friend calls at 6:00pm and asks you to go somewhere the next day -- tough luck, Chuck!! Also they give you a time, but you have to give them a 30-minute cushion.  So if they give you a pickup time of 11:30am,  you have to give them until noon before you call the dispatcher to say they're late.  When they pull up, there might be someone else on the bus that they need to drop off, and they may also do other pickups along the way.  These other dropoffs and pickups don't have to be anywhere near you.

So last Monday, we had a 2:30pm pickup from my therapist on West 38th Street, and when no one showed up by 3:00pm, we called.  The dispatcher said that we were marked as no-shows, which had to be a lie, because we were out in front at 2:15pm.  So the dispatcher said we would have a "rescue" driver in 45 minutes. Now, I have a place to sit wherever I go [the advantage of being in a wheelchair], but there is no place to sit in the lobby of that building.  So, already, my aide was standing 45 minutes, and had to look forward to standing another 45.  Except that, by 3:45, still no access-a-ride.  So we called again -- next estimate: 45 minutes more.  That brought us to 4:30.  Now we are up to two hours and 15 minutes my aide would be standing.  She was understandably fuming.  Access-a-Ride pulled up at 4:45 and there were two separate parties already on board, including one lady in a wheelchair. We dropped one group of two up in Harlem -- yes up to Harlem, after picking upp a lady and her aide at Mount Sinai Hospital in lower Harlem.  The patient was in a wheelchair and yelled that she wanted to transfer into a seat, but all seats were taken.  After we dropped off the three passengers in Harlem, the lady yelled "Now can I transfer?", which drew a groan from me, because that would delay my trip home.  The driver and the aide said no, and it turns out we had another pickup before heading into Queens.  It turned out the poor woman in the wheelchair was going to Brooklyn.  All the way into Queens, she was yelling "I want to go in a seat!" and then when we got into Queens, she started yelling "This doesn'xwas not a happy camper, and she made no compunctions about showing it -- for the next few days.  I knew it wasn't my fault -- I just happened to be there.

Later on that week,  I had an appointment at Cornell, which is right over the river from Queens.  but our 11:45 pickup came at 12:30 and, instead of going home across the river to Queens, we filled the bus with pickups and drop-offs all the way at the southern tip of Manhattan.  We had left the house a little after 8:00 for a 9:30 appointment [for which we were early], and should have been home by 12:30 the latest.  We came in the door at 4:10pm.  The ride on Access-a-Ride in a wheelchair is far from relaxing.  First of all, I am in terrible pain from these braces  [which will finally be changed out in two weeks] and it's as if Access-a-Ride never heard of shock absorbers.  The ride itself is hell.

The bright spot was Louise taking me out last Sunday to Panera and then to Red Mango for the best frozen yogurt!  I'm basically housebound except for about once -- or sometimes twice-- a month that my angel Judy Lewis comes to get me out.  And Louise finds what little free time she has to come by on a weekend and get me out.  The aides don't want to go out, except to do errands, and they don't want me along.   So I hear the weather reports of beautiful sunny days and know I can't enjoy it except for doctors' appointments or the one or two outings a month I have with Judy or Louise.  Back in 2006 and 2007, I had a lot of people who would come over and take me out of my apartment.  But those people have faded away.

Everything seems to be breaking down at once.  I have been in virtual darkness after sundown for the last two weeks.  First, my table lamp broke, and I ordered a set of "sunlight lamps" which sounded great in their online descriptions.  But in reality, they were all wrong.  I had waited several days for them to be delivered.  I am in the middle of the shopping capital of New York, but with nobody to go to the store with me,  I am forced to shop online. Then my ceiling fan/light fixture in the hallway blew and when the doorman replaced the light bulb, it didn't work.  So I think i need a new ceiling fan/fixture.  Now, I finally received the new table lamp I ordered.   And, on top of that, my super tells me I need a new bathroom sink [the stopper is broken] and a new toilet. I bought a new faucet at his suggestion for the kitchen sink [which won't stop dripping] and now he tells me I need a whole new kitchen sink.  Mind you, I still have to do it on the cheap because after I die, this apartment goes to Medicaid.  And my case being pending, I'm told that any benefits I have received since May 1, will have to be paid back if I don't get my Medicaid back.  Where do they think I am going to get the money to pay them back?  Just aides alone work 168 hours a week at $11.00 an hour.  You do the math, because I'm too tired to multiply.