Thanks, Gripes, Wallet Followup, and Other Frustrations

First of all: Things I am thankful for:
Sprintip which allows me to do relay phone calls.
My aides who have stuck with me for years, when there are a lot of easier cases they could be working on, like nice little old ladies who really don't need too much help, just someone to be there.
My family, who invited me for Thanksgiving dinner
Louise, who comes with me to support groups and comes over to help with bills.
Judy, who comes to visit and take me to Starbucks, or further if weather permits, and who came with me to see "Ragtime" on Broadway a couple of weeks ago.
My dad, who helps me make ends meet with grocery money, and a new fridge he bought for me this past summer.
My parents who taught me to do things for myself and not depend on others, an independent spirit which got me through this past week, when everybody was so busy, and I needed to make phone calls to replace everything that was in my wallet.
Mary Knudson, whom I have never met, but who has been there for me.
Maddy DeLeon, who made some frustrating phone calls for me trying to track down my wallet, and who was willing to drive to Brooklyn's armpit to retrieve it for me. She is my angel in other ways too.
If I forgot anyone, please forgive me
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Okay, if you don't want to hear the gripes, and think I come off as bitter and hostile, stop reading here, because the reality is that life with ALS is full of frustrations and dealing with stupidity.  But please read on so you can see that I am not griping for me, because I am rather strong and I can take it.  But think of the little old people who don't question anything, and any other people who don't have the resources and/or presence of mind that I am lucky to retain.  One can only imagine the damage done by people who are in positions they should not be in, because they are either uncaring, incompetent, or just plain ignorant or stupid.  Or maybe they have been in their jobs so long, underpaid and overworked, ready to retire a long time ago, but stuck in a job they resent or hate, and know that in this bad economy, they have few options.  Whatever the reason, the sufferers are the people who are in most need of people who care, have the answers, and are conscientious in their jobs. Not to mention that any of you reading this, could become disabled and/or sick, and could have to deal with these frustrations yourselves.

First, Access-a-Ride and their eight sub-contracting companies.  This paratransit service in NYC is wonderful when it works, which I must say is often, is the best thing to happen to people with disabilities.  It is door-to-door service anywhere within the five boroughs.  And it even connects with Nassau Able-Ride, so you can even go to Long Island. When it is efficient, it is heaven.  If you are in a wheelchair, or unable to climb steps, you can use the lift.

But they have their problems, and this month it has been the phones.  I reached home on Monday from an appointment in Manhattan, at 4:15.  The Access-a-Ride lines to book a trip, close at 5:00.  I have often made bookings this late, even at 4:45.  I had to book my trip for the next night's ALSA support meeting.  For the next 45 minutes, each time I [or the relay operator] dialed, we got a recording "your call cannot be completed as dialed.". At 5:05, just for the hell of it, I dialed and got right through, but guess what?  They don't take trip reservations after 5:00.  So, I wasn't able to go to my meeting at all.
Representatives from the DNNYC,  [which is a wonderful organization to get involved with, if you are disabled and live in NYC], told me that AAR is going through some issues with their phones, exacerbated by internal struggles which have left them understaffed. I hope they resolve these issues quickly, because so many people are dependent on this service, and I wouldn't be able to go to a weekly appointment and monthly support groups without them.  And forget about any enjoyment like theater or visiting people.

This turned out for the best, since I woke up Tuesday morning with a raging cold.  Next rant:  my apartment had been like an icebox for days.  So I called the super, who said there didn't seem to be anything wrong.  But then he opened the living room radiator to fnd that the valve was bad and there
was no heat coming through.  He fixed it within an hour.  One of the better things that happened this week.  I really like my super.  What this is going to cost me, I will find out when I see the maintenance bill. And people with high blood pressure can't take decongestants, so I am pretty miserable, although getting better.  I just pray it doesn't turn to pneumonia.  Using the cough assist machine   can help with that.


And, speaking of AAR, one of their sub-contractors, who told me they had my lost wallet, and to which I took AAR on a cold Saturday morning to retrieve my lost property, claims they don't have itafter all.   My friend Maddy made a few followup calls, and was willing to go there again once they said they had it.  But, alas, my wallet has slipped into another dimension.  No one was available to assist me that weekend.  I had no money, no ID, no credit cards.  I went to my local Citibank branch, and got a temporary ATM card on Saturday afternoon, and waited for the permanent card, which I have since received.  All weekend long, and into the beginning of this week, I managed to report everything lost and requested replacements, either by relay calling or websites.  With the exception of one thing: my Medicaid benefits card.

So here's the most ridiculous frustration of all.  My Medicaid case worker is the epitomy of the person I described above.  He has made so many mistakes, I couldn't list them all, right down to sending a letter threatening to take my homecare away due to my "refusal to cooperate" with the necessary forms.  I had submitted the forms to his office but someone neglected to tell hhim about that.  I can only picture some poor frail octogenarian getting that notification.  Anyway, if you see a compact car with the personalized license plate "Mambo Man", wave to my Medicaid caseworker, [I'm not kidding about this].  So I called Mr. Mambo Man to ask him to help me get a replacement for my Medicaid card and he said "you are not on Medicaid anymore.  You left the system".  Huh?  This was news to me!  So I told him he must be mistaken, and gave him my social security number.  He admitted he was mixing me up with another Cohen [probably thousands of Cohens].  So then I asked him again how I go about getting my Medicaid card replaced, and he said "call 311 [aka "citizens hotline"]  This is a number to report heat outages, ask touristy questions, and the like.  I was puzzled, so he said "There is an office on 34th Street, and I will give you a phone number but they never answer the phone".  That didn't sound useful at all. Then he added "there is a procedure to follow, but I am not familiar with it, so call them.  So I scratched my head, thinking "shouldn't my Medicaid caseworker know the procedure for replacing my card?  hmmmm....

So, for those of you who tell me I am bitter, hostile, ungrateful, and negative......don't even imagine how these things are for me to deal with.  Think of your great-aunts and uncles, grandparents and frail neighbors dealing with this stuff.  And even think of the young-ish person like me, who has to deal with a devastating diagnosis, total dependence on others, loss of abilities, and in the case of something like cancer -- pain and weakness from treatments or surgery -- and imagine having to deal with these frustrations on top of an illness.  Maybe then you can have some empathy for the frustrations of bureaucracy.  And now they come up with so-called new guidelines for breast-cancer testing.  Don't get me started...........

Go Yankees, AFOs/Braces, Flu Shots, Fawssit Shower Unit,Missing Wallet

The New York Yankees are the World Series Champions! Those of you who know me, know that I am a Mets fan, but when the Mets' season ends, I either stop following baseball, or if the Yankees are in the World Series -- which unfortunately happens more to them than the Mets -- I just root for the Yankees, who are the other New York team. I don't know why I am such a Mets fan, but it's a combination of underdog favoritism, living in Queens for almost half of my life, and being from a Brooklyn Dodgers family [you see, the Yankees and the Dodgers were enemies when the Dodgers were in Brooklyn until the year I was born in 1955, and no self-respecting Dodgers fan became a Yankees fan. Conveniently, the Mets were born ten years after the Dodgers left, so that presented new opportunities for the Yankee-haters]. The ticker-tape [or should I say the toilet paper] parade was fantastic. And it's always nice to look at Derek Jeter, I must admit!!

I finally got fitted for new AFOs [ankle-foot orthotics]. The ones I have are causing me a ton of agony. The ALS clinic had wanted me to wait until the wheelchair is fixed before I got new AFOs, but the wheelchair approval is taking longer than expected and I can't wait anymore. Also, my night aides have been using the Hoyer lift to get me in and out of bed, and that has saved my wounded feet some.

My primary-care doctor ran out of flu-shot serum, so did the ALS/MDA clinic at Columbi, and the Cornell clinic, where I am a patient, never even got any. At Cornell, they are only giving the vaccine to in-patients. So they are giving me a "high-risk patient" letter to bring to Walgreen's or the NYC Board of Health.

Next week, I am getting the hand-held shower unit and the correct shower chair and I will be able to use the Fawssit portable shower I received from the ALSA loan closet.

My wallet is missing. Long story, but I am sure I dropped it on Access-a-Ride, whose office old me they had it and I had to come to collect it. So my aide and I took Access-a-Ride all the way there today, and nobody knew anything about it and nobody could find it. So here I am calling credit card companies by relay operator to cancel the cards and now I have to wait for new credit cards, Medicaid and Medicare IDs, Access-a-Ride ID. Luckily I am only out about $20 cash and of course a wallet. Every phone call takes me ten times longer than a healthy person, and the whole process is so aggravating. Fortunately, I was able to go to my Citibank branch to get a temporary debit card, but I can't use it at the store. Without that, I would have no money. I feel so out-of-sorts and we didn't need a three-hour trek to and from an armpit area of Brooklyn on a Saturday morning. They told me to call someone named Leslie on Monday morning, because my wallet might be in a safe, and he is the only one who has the combination. When I called Thursday night, the man I spoke to said "come in any time and we will have it for you". But the number to book a trip was already closed, and I had to call on Friday for the trip on Saturday. I am totally exhausted!