Wednesday, April 30, 2014


Yesterday, I had it out with some folks here over a variety of issues, the most pressing of which was the bathroom in my room stunk (literally) and hadn't been cleaned (despite  repeated politie requests) in more than a week. I told the social worker that if it wasn't clean by the time I returned from physical therapy, I was calling New York State.

Guess what? A nice shiny clean bathroom.

I don't like to be like that, and I am generally NOT like that, but I reached a point where...well, here's another example -- they do laundry but, when it's returned, the hot from the dryer laundry is literally rolled in a ball. I said, "How can you feel good about yourself and want to get better when you're wearing a shirt that has been rolled in a ball and now has permanent wrinkles?" So today I got laundry back and things were folded.

Every morning (well, I did have my fifth shower in a row) I have to wait for my meds and when everyone has their meds, I wait for the "wound specialist" who slaps a gauze pad on my one remaining bed sore. This can often be a long wait, as I sit there on my bed, bare ass, waiting -- and waiting to go to physical therapy. Yesterday I got sick of waiting. The only reason I'm here is for PT and the waiting time cuts into my PT time. So I finished getting dressed and was leaving when the woman showed up. I told her she missed her chance, am not waiting, and she freaked. Calls the head nurse and I said, "No, I am refusing medical treatment."

This bed sore is down to the size of a quarter -- and believe me I wouldn't risk it if I really felt I needed a gauze pad over it. So the nurse is trying to reason with me -- and I said "I am not getting undressed, getting back in bed for this. No." So she said the wound woman could do it in my bathroom and I said, "only if you give me a nose plug because the place stinks since it hasn't been cleaned in more than a week."  I really had had it.

So the head nurse asks me to cooperate just for today so I go in the room, pull down my pants, lean on my roommate's bed (she was long gone to her own PT), stick my ass out and said, "That's all the access you're getting." She said she couldn't quite do it and I said "Too bad, take it or leave it" and she did it. Now I think she's afraid of me (probably with good reason). Today she arrived to do it about 45 minutes earlier than usual.

I awoke this morning at 5:45 to the sound of my roommate fighting with an aide -- my roommate was supposed to go home yesterday but -- and I'm not making this up -- what prevented her leaving was someone didn't fill out the X67R45 form. That number I'm making up, but it was some numbered form. I heard my roommate say, "I am not arguing with you. I am just talking to you" but the aides don't like to be questioned.

Ok, so here's what I've devolved to. When they work on my roommate, they pull the curtains between our beds but the aide is always entering my area  behind the curtain, knocking my rolling bed table and knocking things off it. This morning, I sat up and when she did it again, I shoved the table as hard as I could into the back of her legs (the curtain hid my dirty deed.) I have to say it felt good. She yells to me, "Excuse me" and I replied,"Stop knocking my stuff over."

Later on, my roommate and I are chatting and eating breakfast, but of course, that's not allowed -- it's time to pick up the trays. My roommate had a bite of food in her hand and she asks if she's finished eating -- really?? So the aide tells her she has to pick up the tray so my roommate should tell her everything she needs that's still on the tray. My roommate proceeds to name everything on the tray, including an empty milk carton. I'm sitting there straight faced, but thinking "good move, girl". It's all so childish, I know, but you have to fight back just a bit. So the aide left with just an empty tray in her hand. (I had told the aide I wanted everything precisely where it was and she left me alone.)

Um, I had James again for PT, whom I really enjoy. I came up with a way to end our session which he agreed with and he said, "You and I get along like corn muffins and butter." I told him please don't talk about corn muffins, and he said, "No you and I get along like TOASTED corn muffins and butter" and I told him to shut up and we laughed.

Ah, life at the institution.

Tuesday, April 29, 2014

Bad Tuesday

Today was a bad day at the institution. It began at 5:45 with an aide waking me up to ask me what I wanted. I didn't know what she was talking about and I kept saying I didn't want anything and she said, "you want help, what do you want?" and I heard my roommate say, "She's fine." I said to this aide, "What am I doing to indicate to you that I need help?" Gasping for air? Choking? and she all of a sudden apologized, kept apologizing as she left the room. Of course, I couldn't get back to sleep.

I don't want to go through the whole litany of things -- so much of it sounds so petty but it piles up -- my shell is about 1/1000 of an inch thick these days so it doesn't take much to make me teary.

My regular PT woman is off today and tomorrow and I had this really nice man named James whom I also like because he talks to people about normal things and flirts in a harmless way... typically Price is Right is playing on the TV so he always comments on that and it was a nice change to do a different routine. For example, he tied this giant (5 inches wide by a yard long) elastic around my legs right above my knees and I had to move my legs apart, with the elastic as resistance. Also took a long stroll in the new walker.

I talked to this woman in the PT room who was in a car accident. She was wearing her seatbelt, the airbag deployed but no side airbag so her left leg got effed up badly. She was in the hospital for 30 days and has had five operations. She said she doesn't remember anything about the accident -- remembers driving on this highway and her next memory was "chaos" with many first responders and them trying to get her out of the car with the "jaws of life." She said the jaws of life are actually what woke her up -- she says the airbags knocked her out. She said they told her she may have a limp, but she should fully recover. Nice young woman.

And Phil came to visit today and smuggled in a banana, half a baguette, and about a cup worth of Cheerios. Had to laugh as he's pulling things out of his pants... the smuggled items, that is!

Monday, April 28, 2014

Patience, please

I know all of you want me home as much as I want to be home and I am very conflicted over knowing with absolute certainty that I am making progress and wanting to play that out to wanting like hell to get home and have my longed-for egg drop soup.

I told the occupational therapist that she was working me like a rented mule today -- did this machine where you sit and pull a bar with two hands, sort of like rowing, and as you pull back, it pulls up weights. Three rounds of 50 each. Then she adjusts the bar to somehting different, then again so that my elbows are out by my ears and straight out -- that's the hardest -- same thing -- then she'll say, "do 50 more"

then I worked the same deal with hand weights -- 4 pound weights -- doing various things.

My big accomplishment today was transitioning from the hospital style walker to the go-home style "rolling walker".

this is what I have been using:

This is what I used today -- and this is what I go home with (as a prescription so insurance pays) -- mine doesn't have a basket, but I learned how to use the brakes, how to lock it up, tried the seat which I was a bit apprehensive about but it's very sturdy -- getting up and down, etc. So this is another step (literally) home.

The respiratory guys let me do my own nebulizer treatment now -- which means twisting the plastic end off this plastic testtube like thing and pouring the medicine in -- and Singh, my aide, is so far letting me take a shower every day -- have had a shower three days in a row and I am grateful. Actually I don't need help- -- she just has to make sure that one of two shower stalls is free and i do the rest. Meanwhile she re-does my bed and stuff and lays out clothes so we work together well. I really appreciate the daily shower.

Anyway, be patient. I am getting home one of these days -- am getting closer each day.

Outside Food

To answer Melissa's question: No, you are not allowed outside food and they do check bags. On Saturday, my family brought me a homemade BLT which was heaven and they put it in my youngest niece's backpack thinking they wouldn't check a kid, but they did. She opened the section where the sandwich wasn't and then the guard told her to open the pocket where the sandwich was -- and quick thinking girl -- it must be the Luebke blood -- pretended that the zipper was stuck and she "struggled" to open it and the guard just waved them on.

On one hand, I felt sort of bad she was lying and smuggling on my behalf, but I was also proud of her  for being so clever. I have to say she has a very innocent, sweet face so she was able to get away with it.

What's crazy is that Phil Scott tried to bring me two bananas on Sunday which I would have loved to have had with cereal, but they confiscated them. What's stupid is that I am on potassium pills because some drug I'm taking depletes potassium and I sure would rather get my potassium from a banana than from a pill.

I am on no special diet, and I would gladly have my outside food "approved" -- it's not like I'm ordering in pizza or something but that's the institution. One time the guard told a friend that it's not that I can't have it, but the other residents would be jealous --- yeah, as if I'm going to wave my BLT in their face and say "I got something you don't have...."

Sunday, April 27, 2014

Miss Patricia

I am typically called Miss Patricia here -- respectful but friendly. My regular aide let me take a shower again this morning -- first time I've done two days in a row, and I was grateful. It just lifts my spirits.

I told today's respiratory guy that I am Mr. Rupert's favorite -- he's the head of the department, an older Chinese man whom I really like. The respiratory guy said he believes me because he said Mr. Rupert is always asking in meetings, "How is Miss Patricia?"

I have this device, which I've mentioned -- looks like a kazoo -- with difficulty levels from 1 to 6 and it strengthens your diaphragm -- and I'm on level 4 and he said I'm the only one of the residents on this floor on level 4 and I am so stupidly competitive that that made me feel good. Yeah, I can barely haul this old ass around, but damn it, I'm on Level 4 of the P-Flex device.

Just found a picture of it. You breathe in and out through your mouth on the right end, NOT your nose -- hence the nose clips, but Mr Rupert observed me and said I didn't have to wear the nose clips which is good. You turn the dial and the hole you suck air in gets smaller and smaller with each level.

There is an annoying thing that I've observed here which is when the institution fails, it instantly makes up a reason to justify it -- not an excuse -- not like "we forgot" but some reason why what has happened or didn't happen is  what should be.

For example, Friday, the institution left my roommate sitting in the hallway in her wheelchair abandoned, but she can't get back into bed by herself without the Hoyer lift. Finally I pointed out to the nurse that she'd been sitting there for an hour waiting to get back in bed, the nurse, in the face of  it, says that it's good for my roommate to sit up in a chair -- which may be true -- but there was NO plan for that. I said to my roommate that if that were true, then stick you in front of a tv or in the dayroom (see "One Flew Over the Cuckoo's Nest) or something, not just in the hallway outside our room.

In any event, when you get a meal tray, it comes with a piece of paper listing everything you should have. Today, it was this horrid piece (and really, I am not exaggerating) of "baked ham with Hawaiian sauce" which was the most horrid piece of pieced together bits of ham -- sort of like head cheese with this gelatinous yellow sweet stuff on top. I took one look at it and told the aide that a cat had thrown up on my lunch.

In addition, you got one boiled potato (no seasoning) and green beans (canned). I was supposed to get a piece of bread with one pat of margarine. I was going to skip the bread and put the margarine on the potato. So I pointed out I got no margarine -- nothing -- then I rang the bell -- still nothing and was told that "we don't give margarine at lunch" which is total BS. I said its on the slip of paper. So I surrendered; they took my tray and then when someone came to see why my light (from buzzing) was on, I told the margarine story. She left and came back 10 minutes later with margarine and I said well, the food is gone now -- and she was paralyzed -- couldn't figure out what to do. Said she'd try to find my tray. Uh, no thanks. Meanwhile, my roommate is yelling, "Save it for later."

Precious one effing pat of margarine. Meals take on way more importance than they should and I'm not sure why because I am routinely disappointed.

Saturday, April 26, 2014


No physical therapy today, but I did start the day well with a shower. Stancie and Karen have gifted me with very fancy L'Occitaine shower gel and creams and I have to laugh sitting on a shower chair in the most instituional setting you can get and using fancy shower gel. As Melissa pointed out, "You may not be in a spa, but you can damn well smell like you are."

Got a bunch of phone calls today, did some work-work and then my sister and her family came to visit which was nice. They snuck in a contraband BLT which -- homemade even -- and it was wonderful. Realized it was the first homemade food I'd had in weeks, and there's something to say about food made with love. It tastes different.

Phil Scott is coming tomorrow so I do keep busy on the weekends. It's funny that the day actually goes by fast which you wouldn't think would be the case.

Still cold and rainy here, but spring is coming I hear.

Friday, April 25, 2014

Friday's Accomplishment

Today my major accomplishment took me by surprise. My PT woman, who I really like whose name is Joyce, said I was going to walk from the therapy room back to my room. I'd never walked that far. It scared me a bit, but I thought if she thinks I can do it, I can... and I did.

I don't know how far it is, but the PT room is on the first floor, off the elevators, down a hall, through a room. When I got back to my floor, I have to walk about 2/3rds down the hallway to my room. So that felt good.

The other thing I did in PT was to get my foot up a 10-inch step. Joyce had asked me to get photos of my apt building front steps and have them measured -- and that killer big one is 10 inches. All she wanted me to do was to lift my foot up on top of this 10 inch box which I could do. So she had me do it  8 times and we'll continue to practice that.

The annoying thing that happened in PT was that Joyce was called away from me for a few minutes and I could tell the two were talking about me, and when Joyce returned, I asked who that was. Turns out it's my "caseworker" -- not from social services or PT or medical -- but from my health insurance company checking up on me, making sure I'm making enough progress. The good news is that I am, but this horsepucky about medical decisions are between you and your doctor is ridiculous. As soon as Big Insurance Company decides it's over, it's over.

I have to say the day started badly with my waiting and waiting and waiting to have my bedsore bandaged. I can't go to PT without that happening and I can't put anything on below the waist until that happens. So I'm lying there, bareass, with a sheet pulled over me, just waiting while the clock ticks by... I finally rang the bell,which was ignored, and then decided I am just going. The reason I'm here is for PT and I was missing it.

Of course, as soon as I sat up and got dressed, the nurse appeared. My boiling point is very high, probably too high, but once I reach it, it's explosive. I surprised myself by how loud I was yelling. I really lost it. This meek little nurse, or whatever she is, felt obligated to remind me that I am not the only resident. Oh really?

I wanted to just say "shut up" but I said, "Don't talk to me, just don't say one word to me" in as irate a tone as you can when you're bare ass is doing Moon over Far Rockaway.

Then of course I couldn't stop crying when she left. Finally got myself to my wheelchair to go to PT and the woman across the hall asked me if I were OK, and I said no, and I went in and talked to her and just had this normal conversation about her gay daughter who just had a baby with her long time partner and how they got the sperm, etc. It was nice to just sit there and have a normal conversation,

Later when I came back from PT, she asked if I am OK, and I said, yes, thank you for helping me retain my sanity and she laughed and said that most people say she drives them crazy and how this is the first time she;s been given  credit for making someone sane.

If you're reading this, and it doesn't sound that bad, just pile on every indignity, every dependency on minimum wage people who hate their jobs, food that is literally inedible.

At lunch, I refused it. It was "turket burger" and looked and smelled like a slice of canned dog food on a Wonder Bread hamburger roll. I got a peanut butter and jelly sandwich in exchange which I would gladly eat every day., I told the aide that I can not even look at this plate, much less eat it, and she agreed. I swear a dog would sniff it and walk away.

Wow... I have been asking to have my toenails clipped for three weeks.No pedicure for me... first week I was told a podiatrist has to do it, then it was Passover week, then it was still Passover week, but the doctor just came and he was a really nice guy. I told him the history of my big toe (still ugly) and he reassured me all was well with it, it's just ugly and always will be, but there's no infection or anything. As he was clipping my toes, I joked with him and asked, "If I close my eyes, can I pretend I'm at a spa?" and he said, "If so, you're in the world's worst spa..." Then I said, "Well, would you mind speaking Korean at least?" and he surprised me by taking his smartphone that had some kind of app that translated his voice into Korean so that was fun. And now my feet look nice again.

That's it for now.

Thursday, April 24, 2014

On the downside, heading home

I could write volumes about this experience, but I can tell you one thing -- it would not be balanced as for the good and the bad. This has been a horrendous experience,  and one I wouldn't wish on anyone.

So for my first post back, I'll just give a status report:

When I arrived here in rehab, I couldn't sit up in bed without help. I couldn't use the toilet, walk, dress myself (i could do bra and top, but not the bottoms). My ass was full of bedsores and I hadn't combed my hair or had a shower in two weeks. I was on oxygen 24 hours and had four nebulizer treatments a day and a handful of pills.

Slowly I could get up, get out of my wheelchair, walk with a walker and finally it was time for my "toilet training" -- yes, that's what they call it. I couldn't use the toilet until I was trained. That consisted of reminding me to wipe myself and flush. She must have noticed the look on my face since she said, "You probably knew that, right?" and I said Yes.

So toilet privileges was lifechanging. Then I got my first shower. They put you in this white plastic wheelchair and wheel you in. You're left alone in this roll in shower, and I have to say I have given this great thought and either my memory is dim or else this shower was better than the best sex I've had. It was glorious. I remember just taking that handheld shower and holding it to my face, then hooking it over my shoulder so the water would run down my back... clean hair! Smelling good! Now I get a shower every other day and I am basically on my own. Get to the shower room by myself, get set up, take my shower and just enjoy the whole ritual. I asked my PT woman if she would write in my chart that it was crucial to my rehab to have a shower every day. She laughed, but said no, she couldn't do that.

I crossed one more thing off my can't do list last night. That is that I could do almost everything on my own except one -- and that was sitting on the edge of my bed and then swinging my legs up on the bed -- a movement that 99% of people take for granted. What was bad is that I'd have to ring for an aide to lift my legs up and that could involve a 30-minute wait. But last night, I did it myself finally. An aide had told me that is the last thing most people can do by themselves so I am not alone in this.

I have a lovely woman for a roommate who calls me Lady Love. We basically mind our own business, but we watch Jeopardy and Wheel of Fortune together. She has MS and fell and is in pretty bad shape -- can't get out of bed by herself and they use this contraption called a Hoyer Lift which means they put you on this piece of canvas with grommets that get hooked into the machinery that lifts you -- here's a picture from Google images -- it looks like a crazy amusement park ride, althought this isn't that amusing.:

I have lots of thoughts about being institutionalized -- being absorbed into an instituion. Karen McClellan had brought me "Orange is the new black" which is the true story of a "normal" woman who ends up in federal prison on a very old drug charge and the similarities are incredible. It's a good read.

So now since the wound doctor came to check out my ass, I couldn't go to PT this morning and so I'm off to there now.