Saturday, May 31, 2014

Saturday Night

Well, I solved the great toilet paper mystery. I felt as if I were going through too much toilet paper -- couldn't explain it -- investigated whether the kind I bought had fewer sheets, etc. Then logic prevailed and I realized that I typically use two bathrooms, upstairs and downstairs, and my visits must be equally divided. Now I'm only using one bathroom so it makes sense that I'm using twice the amount of toilet paper than I normally would use since it's all confined to one bathroom. Only took me a week to figure that out.

Let's see. I did some work-work today, had a relaxed day, Phil came over for a while, did laundry, did my PT exercises, made tacos for dinner and then I watched "The Back Back" on HBO. I had wanted to see that when it came out and I had known Steve Carrell (of The Office) was a bad guy in it, and it's a really good "small" movie. If you haven't seen it, I would definitely recommend it as a rental.

Other than that, it continues to be cool, even with some rain showers... maybe tomorrow will be warm and sunny.

Thursday, May 29, 2014


This is a life lesson I still haven't learned -- I procrastinate about doing something, worry about it, let it sap my energy, fret about it when I get up in the night to go to the bathroom... and then when I finally do it, it takes two minutes and is pleasant.

Well, I had been procrastinating since I haven't done my taxes yet. My accountant knew and said we would either file for an extension or just pay the penalty.

I have been home two weeks tomorrow, and I have done nothing about taxes. So to avoid the cliche of calling on Friday, I called today. Not only is all well -- he had filed an extension -- but he had also been in the hospital and we compared stories. Oh yes, I actually enjoyed the conversation.

When I look back, there was no reason for me to procrastinate. What I was going to suggest is that I send him my paperwork and we do it by phone. What did he suggest? Oh, let's see... that I send him the paperwork and we do it by phone. Yeah.

So that's a big relief. Now of course I have to do the prep work, but the wheels are in motion.

Tuesday, May 27, 2014

Graduationn Day

Good news: Steve the physical therapist was here. He gave me an A for my performance, taught me how to use a cane.  I went out into the garden with a cane and up to my front door, up the steps, with the cane.

He told me to use the cane from now on with the exception of going to the bathroom in the night when he thinks I should still use the walker. I asked him about the walker, if I could donate it anywhere. He said no place will take it because of disease and germs and legal issues. What a shame. He said a church might take it. However, he said insurance and Medicare will only pay for a walker once every five years so he suggested (god forbid) I stow it somewhere for five years.

I have to say I'm happy about my progress, and really did feel confident about the cane. I also have to say I've been fairly diligent in doing my daily exercises with the resistance bands. Check out my biceps!

Crazy Billing

I did something incredibly stupid -- which is I got five separate "leftover" bills from Lenox Hill Hospital -- three for $100, one for $200 and one for $600. This was what I owed various doctors after insurance paid. I had them in a neat little pile -- stand by for STUPID -- and I shredded them.

Ok, so this morning I called Lenox Hill to get duplicates... went through various offices... finally got the right woman who searched and searched and said I don't owe any money to Lenox Hill. That sort of makes sense as these claims were all new and didn't come up in the "manage my claims" at UHC.

I told her I'd wait 30 days  and see what the system spits out. The moral of this story is: Don't pay your bills; just shred them, right??

Tuesday Morning

It might even be an air conditioning day today --- it's getting warm. I got the big kiss off from the visiting nurse -- really the bum's rush, so rushed it made me laugh. I answered the phone, she identified herself and asked how I was. I said fine, and she asked in particular about my wound. I said it's like normal skin now, which it is. "OK, then you take care of yourself. Goodbye."

Wow, no "call me if you need me" -- but I guess she's on to other cases. I should be happy.

And Mary sent this photo of the first rose of summer:

Sunday, May 25, 2014

The Joy of Puttering

There's something so delightful about just puttering around -- a little work-work, a little housework, laundry, computer games, TV, nap, etc. Oh yes, I am doing my PT exercises. Half my arms are totally muscle-y and half my arms are total bread dough. Very attractive.

After a rainy cold, more-like-November Saturday, today the sun is out-- not hot, but comfortably warm.

Mary sent this photo of her mountain laurel. It reminds me of my childhood as the woods were full of wild ones. It was always a nice sign of spring. The ones I remember were just light pink.

Friday, May 23, 2014


Not much going on. My new cane arrived today and I thought I'd wait to use it until the PT guy comes back next week. I continue to be more mobile, doing a full work load, etc. Have now been home one week. My health insurance continues to be my salvation -- didn't have to pay a penny for all my prescriptions.

Thursday, May 22, 2014

What I'm Reading

Karen McC brought me this book in the rehab hospital, along with Orange is the New Black which I really enjoyed. This is a fascinating book about a drug company and the Amazon rain forest. I like it because I would never have selected in for myself and I am really enjoying it.

Remember the Screamer?

Michele, this woman across the hall from me at the Institution, called me the other day to say I was not gone 20 minutes when the screamer started screaming and hasn't stopped. Michele said she thinks the screamer was afraid of me -- and I knew that I was controlling her. I had told her dead seriously the day she moved in that there was no screaming in this room and if she wants to be in this room she can't scream. I also gave her a bunch of old clothes and about 1/2 inch left in the bottle of my fancy shower gel. I was good to her.

Then the other night, Michele told me she threw her dinner tray out of the room and it went all over the hallway. Makes me glad that the staff has to deal with her, but sorry for Michele that she has to hear it. I am so glad to be out of that loony bin.

Wednesday, May 21, 2014

More progress

My Physical Therapist came today and I have a whole bunch of exercises I have to do. He is also ordering a cane for me so I will graduate from a walker to a cane. That's progress. Then a visiting nurse practioner came and took me off Coumadin which is a pretty strong heart drug which requires weekly blood tests, checked me out (again), declared my bed sore totally healed. Does this mean I can stop showing my ass to every Tom, Dick and Harry that comes along?

So I am worn out as I am also doing a full work schedule with all clients, but that's good. Ever onward.

Making Progress

Marilyn just left to do errands, but we made great headway. All mail is now sorted, filed and bills all paid current.

The Verizon guy came this morning -- and my phone is now fixed. He said there was a huge outage while I was gone and Marilyn called Verizon to try to get me credit for the whole time, but I am only getting credit from the day I reported the problem which is last Friday. Oh well, it's something.

In the meantime, I was so grateful to have the Internet wifi that Melissa got me as Verizon was also my Internet router, but now both phone and my Internet are working.

But, of course, it's always something. When Marilyn left, she said there's something wrong with the lock on my door and I will have to call a locksmith. Also, the water has not been turned on in my garden yet.

We're making babysteps here -- you wouldn't believe how much paper recylcing has left this apartment in the past two days. I also gave Marilyn all my "fun" entertainment magazines as I know I will never get around to reading all of them. It feels good to not be a hoarder. I kept Vanity Fair and a few others.

Tuesday, May 20, 2014


Barbara came over today and was so helpful. She got all my prescriptions filled, bought me a "pill minder" (I guess I've officially entered old age now), and the finished unpacking my suitcase, did all sorts of things which was a huge help to me. Now Marilyn comes tomorrow and hopefully we can finish what we didn't get to today -- still have stacks of mail, etc. No matter how much I seem to throw away, the pile doesn't seem to go down.

The physical therapist comes tomorrow as well as some home visiting doctor. My phone wasn't fixed... The Verizon guy was good and smart, but Verizon HQ didn't do what they were supposed to do so it's still broken. Have another appt for tomorrow.

So life continues...

Oh, I forgot: Barbara thought I was too hard on the Affordable Health Care Act, but I must say my new insurance company has been a dream come true. Right now, out of pocket, out of a huge, and I mean huge bill, I owe about $1500. Today when Barbara went for the prescriptions, there was no copay so it was all "free." So here's to Obama and the Affordable Health Care Act.

Monday, May 19, 2014

Busy Monday

I had a visit from the Visiting Nurse, also my first of four appointments with the physical therapist who put me through various tests and wanted to see how I got in and out of bed, up and down on the toilet and in and out of the shower, various strength and endurance (pant, pant) tests, etc. He's coming back on Wednesday.

Tomorrow Barbara is coming to have lunch and help me organize some paperwork. And eat Gracie's cheeseburgers. How's this for medical advice? When I was leaving the rehab place, the dietician said I needed protein so I should eat a cheeseburger once a week. Yeah, I can manage that. Hopefully, Verizon will come to fix my landline (between 8 am and 11 pm)

So I'm puttering along, making progress.

Sunday, May 18, 2014

\Sunday at home

Phil left and I have actually enjoyed being alone -- something I haven't been in weeks.  Mt sister's family visited me yesterday and that was fun. Slept until abot 10 and I did all my laundry, sorted through some of the mail and kind of puttered around. Took a nap. Made dinner.... tomorrow the visiting nurse returns and also the PT guy comes at 4.

Saturday, May 17, 2014

Mary's Flower Arrangement

Mary writes: Eneida sometimes puts an arrangement in this tiny vase in the kitchen window. I love these little blue flowers. In the garden they look like they're floating above the greenery.

Saturday at Home

So far, it's been wonderful being at home. Everything I wanted.

Of course, it was a struggle getting out... big pressure on my part... not worth describing, but finally made it to the lobby where Phil was waiting with my luggage at ten minutes to noon. Ambulette was due to arrive at noon so I felt like the queen of organization.

My ambulette service was not without incident and tears (mine). Phil was really wonderful. The guy was late and when I called they told me I had no reservation... of course I did, and I had confirmed it the night before. Then they found it and the guy was an hour late.
The whole point of the ambulette was the wheelchair lift and when the idiot driver finally showed up (after Phil had to chase him down as he didn't have the sense to come to the front door), the driver opened the back door of the van and told me to get in. I said No, he then said maybe I can get in the front seat and that's when I started crying when I said I wanted a lift and he said "no lift" -- well, when I started crying, he relents and opens the back and there was a lift, he was just too lazy to do it. Phil said part of it might be that I don't look sick so he thought he could do the path of least effort. 

This van was like a courtesy van for a 29 dollar a night motel, maybe worse. What a piece of crap. I was strapped in the back like a piece of cargo with Phil in the front seat passenger seat. I have never in my life gotten car sick or air sick, but I was close to it. Traffic was a crawl; it's raining, no shocks left on this van, and I had intermittent tears while Phil tried to say cheerful things like when we were finally crossing the Brooklyn Bridge, he said, "Ok, just a few more blocks" -- I was teasing him about that later saying I know where the Brooklyn Bridge is, and it is NOT a few blocks from my building. 

So my carefully crafted plan was that the van would pull up one building away to a parking garage so I could use the driveway of the parking garage and there'd be no curb. When the guy lowered me in the lift and started to push up the smallest incline of the driveway, he was groaning and huffing and puffing and if I was too big to push. So much for being treated with dignity as the website promised. 

So then the idiot driver pushes me to the steps of my building. It's raining, the handrail was wet, and therefore slippery. That's something I hadn't  counted on. My legs were asleep because I couldn't move them in the almost two hour ride and my butt was dead from sitting. I held on to the rail with my right hand while Phil took my other hand, and I tried (once) and couldn't stand up... and that's something I'd done easily, with no thought, in the hospital a dozen times a day. 

Then out of nowhere, this man appears... Jose the crack addict (or something... definitely a street person) and he's all hands and murmuring to me "don't worry Mama, we'll get you and your chair up those steps" so I said, It's just me, not the chair... so once more, my right hand on the railing, my left hand with Phil and Jose with his hand under my upper arm and I instantly stood up. At that point, the idiot driver takes his chair and leaves. Didn't even say goodbye, linger for a tip, nothing.  

I had ten dollars in my bra that I was going to use for the driver if earned, but he was worthless. As soon as I stood up, he vanished and Phil had to run to get all the bags, suitcase, etc. Jose wanted to help and so he very diligently carried everything inside to my door while Phil stood by and I did the steps by myself (remember the first step is 10 inches, then 7 inches... they're not even to code) but I think, frankly, it helped that it was raining because it gave me no time to rest or bitch I could,n't do it.
I can't tell you the time I laid in bed thinking about that first step. We rehearsed in PT and I could put my foot up on a 10 inch wooden box ten times in a row, but I almost heard that duh-dum music from Jaws when I looked at those steps. Lane told me that I should think of the steps as climbing "Victory Mountain" and that's what I did, and I conquered Victory Mountain
Phil had been telling me about climbing Mount Kilimanjaro and I told him that Victory Mountain was harder, but he wasn't buying that. 

I gave Jose the ten bucks, gladly, and then Phil and I got inside... ordered Chinese food feast, my home landline is broken (yes, the bill was paid) so I have to get that fixed. The visiting nurse came this morning to check me out and we organized all the medicines so that was good. 

So the thing that struck me is my wooden floors. I haven't seen wooden floors in weeks, and I kept looking at them, also no fluorescent lights. Phil and I slept until about 10, then the nurse came, now he is out running and buying bagels and toilet paper, two of life's necessities. I had groceries delivered yesterday so all is well. KNOCK ON WOOD.
I am slowly, slowly doing baby steps, put in my first load of wash. When I got discharged, the paper said that Patricia has mastered ADL... I asked what this is, and it's "activities of daily living" meaning I can potty, dress, feed, bathe myself, etc.  This morning I even made my bed by myself. 
And, yes, there' s no place like home!

Friday, May 16, 2014

Home again

Yes, I made it home, not without incident. Yes, I had my eggdrop soup. More tomorrow when I have more energy. I' m so happy to be here.

The Morning of my Getaway

It's 8:35 in the institution. I have eaten my last 2 oz of cereal (really) and 4 oz of egg beater scrambled eggs and a juice out of a plastic cup... won't miss any of those.

I have to have my wound (!) dressed, have a meeting with Nurse Ratchett who will come here, put my plant in a bag, put the pictures of my nieces and nephew in my suitcase... I have my WiFi connection plugged in and had just kept it plugged in all this time and I just wrote on a piece of paper to unplug and take it. That's the kind of thing you think you'll remember.

After Nurse Ratchett, I don't know what happens next. I have to say I'm nervous and anxious -- just another change, this time a good one, but still. I am not worried about the ambulette; I'm a bit worried about the step -- I've had weeks to think about that one step. It's drizzling rain... the screamer told me that's good luck to start something new on a day it's raining.

Oh well, here we go. This is definitely a "hurry up and wait." I did save a L'Occtaine perfume sample ("Orchide") for today so I'm smelling like orchids!

Thursday, May 15, 2014

Feeling better at 4:15

I asked an aide to just get my suitcase out -- a big rollerboard and she went one better. She totally emptied all contents of the closet and my two clothes drawers on my bed. Luckily Dr Phil was having a show about hoarding which was inspirational and so I came up with a plastic bag (which I had been hoarding) of clothes, magazines, my Gideon Bible, and a Book of the Month Club book that I read about two chapters in and then lost interest. I decided I will NOT return to that book and donated it.

I had a brown shopping bag and I put in stuff for the screamer -- two tops, a pair of socks (with the no-slip bottoms, and a few other things. I told her I have a bag for her, and she was pathetically grateful. She has nothing to wear but the hospital gowns and now she is going to go to tomorrow's luau (gee, sorry I'll miss that one) with one of my tops worn as a dress since she's 4:11"

What's weird is that I don't have a purse, and there's stuff that just calls for a purse -- like the papers I have to show that the walker is mine, my apartment keys, glasses, etc. Two of my three nightstand drawers are cleaned out and the third one has all my electronic stuff in it.

I also have all my toiletries... I separated the hospital stuff and left it in the bedpan in the third drawer. I don't want their cheap ass generic toothpaste or lotion. Not when I have L'Occitaine shampoo and shower gel

Home Help

I will have two separate home helpers -- one to come change the effing bedsore gauze pad who will come every day and then a PT person and I don't know how often they come.

I have been sitting here, immobilized by depression. The screamer has gone somewhere which is good. I finally roused myself... ok, first order of business is to go to the toilet. Check. Next in to do my post-lunch nebulizer... doing that now... I've sorted through a lot of stuff but I think I will ask an aide to get out my big suitcase. I am not differntiating between clearn clothes and laundry as I want to wash it all. I've also been taking out the nametags. Actually what I'd like to do is to lie down and go to sleep,

Will I survive until the finish line?

I called my home answering machine last night and I have two messages from a medical supply company saying they are trying to deliver my Hoyer Lift. This is a huge piece of medical equipment that is used to lift someone in and out of bed. Never used one, never had to. I called this morning first thing only to get an answering service. Then my social worker isn't in, so I spoke to her boss and gave her the info and she has now called, said it was a mistake and canceled the order.

Then it was on to wound care. It now measures .7 x 1 (tha'ts 7/10ths of a cm, by one cm.) The wound care nurse said that if it were her decision I wouldn't go home while this wound still existed. I said, "well, it's not your decision" or maybe I just thought that. Then the wound care (Dr.Silent) ... well, I guess he looked at it and when I asked if he did, she said yes, and I said, "Well, he doesn't have anything to say?" So that sort of shamed Dr Silent into coming back and talking to me. He insisted that the bacitracin route isn't enough and that not only should it be changed every day, but he thinks I should change it every time I use the toilet.

I have cried about five times alrady today and its just going on 11 am.. My legs hurt from walking so much and tomorrow just seems unreachable. I tell myself nothing has changed, that I'm still going home, that I can do whatever I want when I get home but I have to say that, once again, I just have no reserves. I have really tried like yesterday to be cheeful and bring life to this place. When I saw my generic rice krispies (aka Krispy Rice), I just cried. I am sick of generic food, drinking out of plastic and styrofoam, wanting to cry when I lift the steam cover off a meal.

Once again, my day started with the screamer having a fight with some aide and I was three seconds away from screaming Shut the F Up. Such a powerful command. I don't think I've ever said it aloud. It  not only tells the person to shut up, but it tells the person you are so sick of hearing her voice. After that, I heard her grunting and and sounding like she's moving her bowels so maybe there will be a small mercy and I'll be saved the sights and smells of her enema.

The recreation lady is trying to organize some sort of bingo/scavenger hunt and I want to scream STFU at her too. She tries with these peppy morning announcements of what the day is, what the weather is, what's for lunch and dinner. It's almost worse to know in advance. She ends each announcement with this drawn out "beau-tee-fullllll" -- her sort of signature sign off and it makes my upper lip involuntarily curl.

Wednesday, May 14, 2014

My Lovely Parting Gift

The screamer is the gift that keeps on giving. In addition to complaining that I looked at her on my way to the bathroom, she has now said that I have "so many men" visit me. If it were only true! It made me laugh --- yeah, I'm running a hot sheets place on the side... and how these men try to look at her. Well, Phil is the only man, and I can vouch that he has his eyes straight ahead as he passes her bed on the way to me.

Ok, so every morning when they ask her if she has moved her bowels -- yes, a lovely conversation to be forced to witness, the answer has been no. It's now up to three days... and I have this horrible feeling I will be forced to take part in my fourth enema... one in Lennox Hill and two here with my former roommate. The first two were gagging... I mean, I can't describe it. By the time my former roommate had her second, I was able to joke with her and requested a gas mask and an oxygen tent. They opened the window in the room, and I sat there with a sheet wrapped around me shivering for about an hour. Maybe her bowels will do me a favor and move so I don't have to endure my fourth roommate enema.

In PT today, I took a walk outside with my PT woman so I could experience the walker on uneven surfaces. I also by sheer will had the entire group of five or so "residents" all bitching about the food, interacting with each other, laughing... some of their descriptions of the food really are funny. One described our semi-monthly bagel (big treat) as "chewing on a life preserver." I really felt like Jack Nicholson rousing the day room folks.

Even this old Trinidadian woman joined in and then I was asking her about Trinidad food and the most well-known is ROTI which is unleavened bread with various stuffings -- really like a burrito. Trinidad and Tobago seem much more Indian/Pakistani than the other islands. Also, that every culture has something like it: an eggroll, an empanada, a pasty, a roti, a burrito. I looked it up on the Internet and there's a bunch of Trinidadian places in Brooklyn so maybe someday I'll try one. Also this Trinidadian soda that comes in pink and in banana flavored called Ting.

this is a chicken roti. Roti is the bread AND also the sandwich.

this is Ting which comes in a variety of flavors -- it's Jamaican -- this is the grapefruit flavor.

this is the most well-reviewed roti place, located in Brooklyn

Also, this man asked me if it were true I was leaving on Friday and I said I hope so and he asked me to have a drink for him "if that's the kind of thing you do" and I said I really want a glass of beer and he said I should toast him --- "toast to Big Red" and I said I would, and I will.

Bedsore Saga -- chapter 37

Jen just came to change the dressing and she tsk-tsk'd and said in her chinese/philipina accent, "Oh this is very small."

so we've gone from small to very small. Bring on the daily vistiting nurse! By the way, the visiting nurse who was supposed to come yesterday is now coming today.

Reconfirmed with the social worker that all is set for Friday. Don't know what more I can do. I tried to re-confirm the ambulette and they told me to call the dispatch office (with a phone number they gave me) on Thursday at 5.

Fight at the Institution

Last night there was a screaming fight that lasted a good half an hour. Of course, I muted my TV so I could hear it, but the screamer's TV drowned out most of it. The gist of it was two roommates screaming at each other over TV volume. Then you'd hear staff trying to calm them down. From what I could piece together, the quiet roommate, seeing the noisy roommate was sleeping, turned off his TV which irritated the heck out of the loud one. There were two men, both screaming F You! F You! F You!

It was scary and I even (seriously) decided if I heard a gunhot (god only knows where I thought one of them would have a gun) that I was going to get on the floor between my bed and the window/wall. That way no one could see me. It was really that angry sounding. Ah yes, the restful life in a rehab hospital.

It isn't a surprise. This place is a pressure cooker. Add in physical pain, being marginalized, being ignored, being treated like an object, bad food, no fresh air, etc and it's no wonder fights break out.

Meanwhile, the social worker and the head of nursing both came to see me this morning about an "incident" on Sunday night with the screamer where she said her privacy was violated and I got to see her naked or something. I have no memory of that and told them so. I said that I feel as if the nurses and aides are vigilant in drawing curtains--- which I do.

According to the screamer, who overheard the questioning and filled me in, I was walking past her bed on the way to the bathroom and the curtain wasn't drawn and they were changing her diaper. I said first of all, I wouldn't look because I wouldn't want someone looking at me and I respect that. Second, I said I don't WANT to see. I did whisper that she is quite difficult, there's been lots of "incidents' but she is a tough patient to handle.

Really, in order for this to be an "incident" it would mean that I would have to actively take part in looking at her lying there which I don't. I told both of them that when I'm walking to the bathroom, believe me, I am concentrating on walking and not falling so I have my own agenda.

I sort of laugh about an incident with my old roommate Pam who I really liked and miss. She wanted her fan turned on and no one would come to do it. I said I'd get up to do it -- actually I had to plug the fan in and I was wearing just a hospital gown. I joked with her that when I bend over to plug in the fan, she can't look at my ass. So I said something like, "OK, divert your eyes, I'm bending over" and she kept repeating, "I am watching American Idol, I'm watching American Idol" in the way you cover your ears and say la la la la la when you don't want to hear something.

The Bedsore Saga - Chapter 38

When last we visited Pat's rear end, there was one remaining bedsore measuring 1.1 x 2.2. This was cause for wound care training for Phil as well as cause for arranging a visiting nurse to come to my apartment daily to change the dressing. This was much ado about one scab.

Last night, the night nurse, who I really like, said she would change the dressing and she literally scoffed at it, scoffed at its size and told me when I go home to just put some bacitracin (similar to neosporin) on it. She said to keep it clean (yes, I take a shower every day), dry it after the shower (Ok, good advice) and then put the antiseptic cream on it. That's it. She also said it's totally "dry" meaning it's a scab.

When I mentioned that to the day nurse, the one who trained Phil, she was appalled. The judge and jury is going to be the wound care doctor who comes on Thursdays. I am going to explicity ask what the course of treatment is.

I do not object to having a visiting nurse, although I have to admit I have an old fashioned view of some old white lady with a navy cape, sitting by my bedside and knitting while she occasionally pats my fevered forehead with a cool cloth or something. I am wondering, seriously, what she could do for me -- go out for Chinese food?

I don't know what PT help I'll get at home. but yesterday I was taught "standing tall" exercises which basically means stretching, marching in place (oh yeah, very cool looking), etc.

Happy Birthday, Mary!

I don't really have the words to describe what Mary's friendship means to me. When I think about my life, she is always part of it. Good times, bad times, rough times, happy times. Laughing, crying. World events. Births, deaths and everything. People have often commented to me how they envy my friendship with Mary and wish they had one like it. I know how incredibly lucky I have been -- from way back on that day in September 1967 when we met until now. She was 18, and now she's 65 and neither of us can believe it. But through it all, we weathered whatever came our way together. Happy Birthday, Best Friend and all the best to you all year long.

Tuesday, May 13, 2014

Three Positive Things

After all my griping, however justified, I did have two nice things happen. In PT they had put my name on the borrowed walker on a piece of tape, and when I got my real take-home one, my PT person took it off and as a joke he put it on James and he took my name and put it over his heart area and said that now people will know that his heart belongs to me. It was just a sweet thing.

Then I asked Joyce, my PT woman, how long she thought I'd be using the walker and she thought about a month. She pointed out (hey, there's always good news) that I have no muscle damage and no brain damage (well, that's debatable after this place) so it's "just" weak muscles. At least she didn't say "oh about a year" or whatever.

And my "manager my claims" website section from my health insurance shows big big big bills 100% paid and the amount I owe is a manageable amount. That doesn't have this place on it yet, and I had asked the biz office guy when I was talking to him what I might expect and he said that sometimes you get charged a $500 "admission fee" (read: a $500 f you fee because we can) and a $25 a day copayment. Hope that doesn't happen, but even that is manageable.

Counting down the Days

After the to do a few weeks back about missing PT because I couldn't go without my bandage being changed, we made a compromise. I was willing to wait until 1030 and then I was leaving. That worked out well until today when the regular nurse was out. I finally gave up waiting around 11:20. It kills me to sit here, watching my PT time being eaten up because all I need is someone to slap a gauze pad on my butt.

So I finally left -- oh, but not before becoming the right hand gal for the screamer. She broke her phone charger and was on with the phone tree folks trying to get a new one. She can't press the numbers on the phone and so she kept asking me to do it. I finally took her phone and charged it with my charger. I told her that the head of recreation goes shopping on Fridays and she should tell her what to buy and she'll buy it. The phone people were telling her to go to Radio Shack and she said she can't do that; she's in a hospital and so they told her should could go to Wal-Mart.

Finally she lost it and started screaming GO TO HELL GO TO HELL, something I've often wanted to yell at phone tree people.

Anyway so I went to PT, got my real walker to take home, along with proof of ownership that I'm supposed to show the guard so they know I'm not stealing it. The social worker assured me all is set and that on Friday morning, I sit and wait for Nurse Ratchett to explain all my prescriptions to me. I just hope Nurse R doesn't pull one of her power trips. They want me out by 11. I have the ambulette for 12 noon.

The social worker also told me that I'd have a visiting nurse every day for my wound. That is just plain ridiculous. It really is. Today, when I returned from PT, the "new" nurse who had never seen it said, "this is small and dry"

uh, yeah. You would think my intestines were outside my body. I could actually change it myself. I can do it standing or lying down and reaching around, but I haven't said that. Phiil is trained and I get a visiting nurse for a 2 cm scab. Not to be too graphic, but there was not been one molecule of anything on the gauze pad for more than two weeks. I seem obsessed with this sore because they are. If it were totally up to me, I would have stopped the gauze pad about two weeks ago, but certainly now.

When Phil was getting his training, I asked "when will we know that it no longer needs dressing?" and the answer was like "when it's totally gone." really?

Ob, another sad thing about the screamer. She told me she overheard me saying I'm going to leave some clothes as donations. I have a few tops that are past their prime and I noticed that the rough washing here has put some pinholes in them. She asked if she could have them as she has no clothes here. I told her I thought they would be too big for her and she is 4 feet 11 inches. She has it figured out that she could wear it as a dress. Fine with me. I don't really care, but I don't want to see her in them so I will wait until Friday to give them to her.

It reminds me of this story I read years ago about a woman who donated her favorite plaid wool skirt and she imagined how lovely some poor woman would look in it and how maybe she could wear it to a job interview in it. Then she saw some crazy homeless guy in her skirt... and that's sort of how I feel about these tops. I was donating them so I don't really care who gets them, but that doesn't mean I need to see my donation in action.

I also have this Gideon bible that has followed me from Lennox Hill and I asked the recreation person if she wants it and she was all excited. She gets requests for bibles, and doesn't even put them out in the (pathetic) library (aka a bookcase). So that bible will get a good home and comfort someone.

Right now, I am so hungry I could scream and someone is yelling NURSE, NURSE in a bellow. The curtain is pulled between me and the screamer and she's watching TV. Wow, that's a surprise.

Being Kind to the Screamer

It really isn't in my nature to be mean -- well, not on a continual basis anyway. I have been listening to the trials and tribulations of the screamer. She wears a diaper, can't get out of bed by herself, has an insulin pump, is covered with bedsores, and just got a UTI. I believe if you are diabetic, you know your body well, and last night she was trying to tell them something and finally said, "I am at your mercy" and that really hit home with me.

All she wants is that she get her antibiotic at the same time she gets her meal or else she gets nauseous, and they wouldn't do it... well, no, not that they wouldn't do it, but no one cared enough to do it.

This morning, I awaken to her arguing with the aide who wakes her up at 5 am to see if she wants her diaper changed and she didn't and she resents being awakened which I understand and she just blurted out, "leave me alone" which I can sympathize with.

Then she realized she lost this address book. Oh, she also has bad vision so when someone comes in the room she doesn't recognize them and has to ask who it is. The aide couldn't care less about her address book and she's fretting about it because someone is taking care of her cat and that person's phone is in the address book. So I get out of bed and I ask her about the book and start looking for it. I'm looking through her bedsheets, under the bed, in her drawers (with her permission) and I find it. She was so damn grateful. At one point, she thought she had dropped the book in PT, and she asked them to investigate that and the aide said the nurse would call but we both knew that wouldn't happen.

I gave her the book -- and then asked her if she has her name in it and she didn't so I wrote her full name and room number and cellphone number in it.

OK, so the screamer and I will not be fast friends, but I am trying. She has a rough path here. I had to laugh because she told me I have "beautiful clothes" and was feeling good for a second or two until I realized she has low vision. I do have colorful clothes so she probably sees this blob of pink or whatever.

Monday, May 12, 2014

No More Wheelchair

My walker was delivered to my room. Phil got his training. I made the ambulette reservation and got a confirmation via email.

Monday in the Institution

The institution continues to be the institution. Today was the day I was supposed to give up my wheelchair, but of course, they didn't have my walker I take home to give me. I have been practicing with this new walker and today walked again from the PT room to my room and back without resting. (well, I rested for a bit when I started the return trip). Spent 2-1/2 hours in PT/OT today and was full of life.

There's a group of older (probably my age) African-American men and one of them referred to me as his buddy. Then one used the expression "good as mug" which I'd never heard. I asked if I'd be cool if I used that expression or sound ridiculous. They said I can use it since I'm a member of the club. What club? The H.O. Club -- which stands for Hang Out Club so I have found social acceptance at the institution.

Last night I just tried to roll with the punches -- in this case, the punches being full lights on in my room and tv turned to full volume. I didn't say a word. Finally a nurse came and made her turn it down.

So one of the conditions of my release is that I appoint a wound care specialist which is Phil and he get training. Over the weekend, I was told that if Phil comes on Monday, we should page Gigi, the wound care guru, and Gigi would come and train Phil. So Phil shows up on time, and of course Gigi isn't in today and no one else could possibly do it. The head nurse here during the day really is like Nurse Ratchett (or whatever her name is from Cuckoo's Nest) was adamant no one else could do it.

Well, what about Jen? She is the nurse who changes it every day. No, says Nurse Ratchett because my wound had already been dressed for today and it doesn't make sense to take off a perfectly good bandage to put on another. Phil can come back tomorrow. I felt bad wasting Phil's time.Nurse Ratchett also said that we should just wait until Friday when I'm leaving and both Phil and I said No in unison. I know how that story would end. I'd be sitting cooling my heels until 5 pm... that's why Phil and I wanted it done today.

So when Jen came in my room to give me this med, we asked her and she said she could come back in an hour to give Phil the training so I said to him it's better to wait than to have to come back tomorrow. So glory be. We waited. He got his five minutes of training (including such wisdom as "wash your hands before you start"). He got to see my ass, but as promised, was very cool about it and serious.

We made sure the training was noted in the official nurse's logbook or whatever, and Jen also wrote out instructions so I have that as 'proof' that the training is done.

Today I'm going to reserve the ambulette and tomorrow I am going to check in with the social worker to see if anything else stands in my way.

My OT woman told me she had been asked about me on Friday, whether I was ready to go home, and she said of course she is. So I don't know what happened, but the institution reversed itself.

I am trying to just let everything roll off my back with the countdown to freedom. Phil is going to come back on Thursday and I want to have my clothes laid out and everything packed on Thursday for Friday. I may have mentioned that they want me out by 11 am, which is fine with me, but I think I will reserve the ambulette for 12 noon.

I am quite relieved, and quite grateful, that Phil stuck around for his training. What annoys the heck out of me is Nurse Ratchett was mean just because she could be. Just a damn power thing.

Sunday, May 11, 2014

My Wish List

a manicure/pedicure
shaved legs
chinese food
sleeping in utter silence and darkness (or a reasonable NYC facsimile)
sleeping in a nightgown
using a clean bathroom
sitting in my garden and getting fresh air

oh, I know that egg drop soup won't disappoint. I think I'm asking for an extra pack of fried noodles.

MILO'S new bed

Mary writes: I guess it's comfy. Hope the whole rack doesn't tumble down. The bag is a "wonder bag" that acts as a slow cooker without electricity

Mother's Day in the Institution

I awakened to the screamer having a fight with Jen, this lovely drug nurse. The other day, the screamer said to Jen, "Didn't you learn this in nursing school?" Jen really is this sweet, Chinese-Philipina woman. So after the screamer gets satisfaction, she turns all sweet and she wishes Jen Happy MOther's Day and asks if she has children. Jen says, "I have one baby up above. I have an angel baby." There was a day about three weeks ago when I got angry with Jen, and I had regretted it ever since. It was a day where I had just had it. I even regretted it as I was doing it. So just now, when she came to change my bedsore bandage (the sore is practically non-existent), I apologized to her for that day and I asked if she would forgive me. She said something like oh yes. And then said, "I know it's just a burst of emotion and it isn't aimed at me personally." I told her, and this is true, that even as I was doing it, when I saw her face I felt bad. Then I told her that I wanted her to remember me by my face, and not my butt which she has seen daily up close and personal and she laughed. So I know this sounds hokey, but I feel better about it. And now the institution has given us all a white carnation. The man who brought them around had a bunch of white ones and then one red one. I remember years ago, my mother knew and abided by this whole code of carnation colors -- like if your mother is dead, your kids are dead, whatever. Let me see if I can find it. As it turns out, the inventor of mother's day loved white carnations... and that became the original mother's day flower in 1908. Now children are supposed to give their mother's red carnations and put white carnations on the graves of their mothers. Oh well, I've got one white carnation. Maybe I'll put it behind my ear.

Saturday, May 10, 2014

Kinda feel bad for her

The screamer's TV broke, and they can't fix it. As I said, I kinda feel bad. However, when I feel that way, I remember the middle of the night last night when an aide tried to turn down her TV and she loudly protested her rights to have the TV on as loud as it took for her to hear it.

Think "Throw Mama from the Train" and that's her.

At least I don't have to listen to the 700 Club spouting off about those nasty gay people.

I was also afraid that she would accuse me of breaking her TV. I can tell you that the thought crossed my mind to either unplug it or take the remote control and put it somewhere only a tall person could find it, but then thought of that biblical thing about karma -- that if you send something bad out into the universe, you get bad stuff back times seven. I am not messing with karma and my release from this prison.

Have to give a shout out...

My first few days here were horrible. I didn't know anyone. I didn't have a phone. The food was horrid. The people ranged from mean to officious. I got here on a Thursday and that Saturday I had an aide named Clara, this beautiful Bahamian (I think) woman whose accent just sounds musical. She wasd so good and so kind to me and when I told her that back then, she said how she used to take care of her mother.

Ever since, she has stopped by to say hello to me (she works weekends) and I just told her I was going home. I thanked her again for her kindness that day and how I will never forget it. She said, "A good God sent me to you at a time when you needed it most." And that's the truth. /She hugged me half a dozen times, and, of course, I got all teary about it and then told her the next time I see her I hope it's on the dance floor or Macy's or some fancy spa.

Fran's Cake

It's unusual for me to see something edible that I think is "too much" but this might do it. Fran had a potluck dinner at her office and someone broght in this cake.

Fran explains:

Amy in my office brought this cake for our pot luck dinner. Her little ones love it. She often makes it for birthdays for young and old.
It was beautiful. It's a chocolate cake with chocolate frosting. Kit Kats surrounded the cake and Mini M&Ms topped it. You are limited only by your imagination as to substitutes (lady fingers instead of Kit Kats
Yellow cake, white frosting....). The cake and frosting were not sweet but boy if you ate the MMs and kit kat with it you'd have sugar shock. A very festive looking cake.

Ok, so how about a scoop of vanilla to top it off?

Friday, May 9, 2014

O Happy Day

I started today with great hope for a 10:30 "discharge meeting" which went horribly wrong. I thought we'd talk about the details of my departure and I had written down questions in a notebook, but instead they said I couldn't be discharged without a sleep study, and the sleep study took at least one week to set up.

When I was at Lennox Hill, they wanted me to wear a c-pap (if that's how to spell it) machine as one of the doctors thought I had sleep apnea. It made me claustrophobic and I could not do it. So I refused the machine. The c-pap directive followed me here and they said in this meeting that they can't discharge me without a sleep study for the cpap (which has sat in my closet here for 5 weeks)... the respiratory therapist says she does not think I have sleep apnea, and neither do I. 

I was in a Catch 22 -- either I stay an extra week plus and get the sleep study and you all know I am  really at the end of my emotional stamina here... honest to god. I can't just accept the cpap which I'd be willing to do -- I'd even buy the blanking machine to get out of here, but the machine to take home needs a prescription and they can't do a prescription without a sleep study.  

If I leave "AMA" (against medical advice), I am cut off from everything, including prescriptions, the walker I was taking home and home care. I don't care about the walker as I could buy my own. I care slightly more about home care (meaning PT) but I am confident that I can live independently. Plus I have tremendous support of people who will stay with me. The thing I can't live without is the prescriptions. Mainly high blood pressure kind of things -- and I do NOT have a primary care doctor to write the scrips because of the affordable care act my insurance was canceled so I started a new insurance in January so I have not yet gotten a primary care physician. 

I was caught in the teeth of the medical bureaucracy. the head of PT could only give me high grades and I had been told I had exceeded all goals they had for me and medically all my numbers are good. Luckily, I had another visit with the psychologist -- again I really like her -- and she is on my side and I said I am unwilling at this point to just accept that I had to stay here 2 to 3 more weeks.
The social worker was supposed to tell me this afternoon if they could substitute some kind of pulmonary test for the sleep test and she hadn't shown up by 4. So I had the nurse contact her, and she said she'd talk to me before she left. I was absolutely despondent.
I had decided that I was not going to do anything until I heard what the social worker said. I planned to call my health insurance company and tell them -- so odd to be on the side of the health insurance crooks! Or as my sister said, "{name of health insurance company} would tell them to throw your butt out."

The social worker came by to say they realized that the cpap "had been discontinued" which means I CAN go home on Friday, with prescriptions, with a walker, with home care, with one exception. I have one remaining bedsore which measures 1.1 by 2.2 centimeters. I have to appoint a "wound care specialist" who can be a family member or friend. I named Phil.
Ok, here's where it gets bizarre. Phil has to come for wound care training. I called him and told him I have good news and bad news. The good news is that I am going home on Friday... Ok, so the bad? I said, "You are my wound care specialist and you have to have training."
I know I'll be paying for this for a long time in teasing. Phil was going to come home with me anyway for the weekend and help me get settled. I asked if Phil had to file reports or sign things or anything and the answer is no, just have training. It didn't occur to me that his training might be on my real butt. I told him that if the price I pay to get out of here is mooning him, I'm willing to pay the price. And here I thought I had no dignity left, but we keep finding new depths to deny me dignity.
I am planning on going home in an ambulette which means I sit in a wheelchair and they raise it and lower it into a van. I chose that as the no-worry solution. I could take a regular car service but I worry about getting in and out of a car. My sister and her husband said they'd drive me home, but they have a mini-van. Easy to get out of (swing your legs around and stand up) but harder to get in. Or I could be "medically transported" which means on a stretcher in an ambulance which is big bucks. Hal told me he'd pay for the ambulette and I found this great company and called for an estimate... it's $345 plus $50 to use their wheelchair. So I am grateful for that.
I can taste that egg drop soup now! Please say a prayer or whatever you do that no snags develop and Friday remains my day of freedom. If I physically could click my heels, I would. I can not wait to be home. Something is really wrong with this system.

Thursday, May 8, 2014

The beat goes on

This was a horrible morning. No aide ever showed up for me so no shower, no washing, no toothbrushing. I noticed when they brought my pills, that there was one missing. When she returned, I asked about it and was told that no, all pills were there. I said I get two shiny capsules -- one blue and one pink and one of them was not there. No, it was there. Finally I said, I'm not going to argue with you about this.

Later they brought this LPS -- liquid protein suplement -- which is horrible -- a shot glass of yellow goo and I just said no, I'm not taking it. I missed PT this morning totally, waiting for my three seconds of the wound care doctor. My bedsore guess was 0.1 centimeter off. The measurement was 1.1 x 2.2

My bathroom door is again blocked by the screamer. I don't know what I'm supposed to do.

When I went to do my nebulizer treatment this morning, I saw the machine had been unplugged, evidently to plug something in for the screamer.

Her TV has gone non-stop, full-volume all morning. In addition this morning as I was thinking I couldn't take the noise much more, they set off the fire alarm bells which went on for about 20 minutes. It was pretty much more than I could take. What I wouldn't give for 10 minutes of silence.

Lunch arrived and it was one of the disgusting meat pattys... and the horrid broccoli mixture. They name it a different thing but it's essentially the same thing -- today it was "scandinavian mix" but it's bad broccoli with something else.

I will say this: an aide took pity on me and my lunch and went to the kitchen and got me the alternate lunch.

three hours later....

So now I have a "discharge meeting" scheduled for tomorrow at 10:30 and I had a nice, fruitful meeting with the therapist who I really like and was very helpful, really. So now the screamer has been out of the room and I've had blessed silence for at least an hour. I don't even want to turn on my own television.

to be continued...

It's gotten worse

Her lights were on until about 1 am, and her tv, blasting sitcoms until about 3. Try sleeping in full light with a blasting TV. I think an aide must have turned off her tv, but then about 7 am, it's on again and has been on since. She watches sitcoms and just the thought of a laugh track makes me want to scream.

But now, she has discovered so-called "christian" tv. So I've been forced to listen to how bad gay people are, how bad and strong the "pro-gay lobby" is -- next segment was the "house of horrors" of an abortion clinic, now we're onto christian persecution around the world. -- now the guy just said you can't talk about being a christian even in this country without being persecuted because of the pro-gay lobby -- i guess gays are godless. yeah, they must be. I have a headache and no reserves left. PT is postponed today because Thursdays is "wound care" day -- where the special wound care doctor spends at least 3 seconds (really) examining lets have a pool on the size of my last remaining bed sore. Last Thursday was 1.8 x 2.7. I know it's gotten smaller so I'll guess 1.0 x 2.2

Oh, I forgot to mention... the screamer is bedridden (that's probably a politically incorrect word) so I had said to the nurse yesterday, "well, at least I know she can't come strangle me in my sleep." First of all, what sleep? But I did have a nightmare (really) that she somehow crawled out of bed and came over and was biting me in the head. Yeah, biting in the head is significant because that's where she hurts me the most... in my head.

Wednesday, May 7, 2014

Bad Day in the Institution

The institution and I butted heads today, and of course the institution won. Actually, I had a nice day up to a point. I got a shower, went to PT, did my thing for a long time, did steps right left right left instead of one tread at a time, went for a walk, did the various machines, etc. Came back to my room and it was Italian Day -- that's what they called it... in the main dayroom downstairs they tried to make it into a luncheon and celebration but I didn't take part. Ate my vegetable lasagna (lasagna with frozen peas and carrots and the ever present broccoli), a piece of carbohydrate they called "garlic bread" and then spinach. I'd give it a D. Saving grace of Italian day was we got the restaurant quality cheesecake - and when I say a "sliver" I don't mean one molecule more.

Oh, by the way, for breakfast, there was no bagel but the world's smallest croissant. On the menu slip it said CROISSANT - FRENCH

Yeah, in case we were getting an American or Hungarian croissant. I've eaten croissants in Paris and this one did not transport me to gay Paree. Made me long for sweet butter and brioche and French roast coffee with warm milk.

so I eat my Italian Day lunch and then Russell visits and we had a nice visit, talking about lots of things, including the future of cameras (obsolete) and photographers. When he left, I did some work-work and was in the middle of writing a press release for Brad when they wheel in my new roommate who turned out to be none other than the screamer from two doors down.

I literally burst into tears. How much am I supposed to take? How hard can they make this road for me? I go down to the nurse's station who also couldn't care less. It was during a shift change and the night nurse comes on duty and I said to her, "Myrna, they gave me the screamer for a roommate, tell them what she's like" and i saw Myrna's face fall. Then this aide named Juan strolls by and I said, "Juan tell them about the screamer who is now my roommate" and he said "yeah, she's pretty bad" or something like that. I said it wasn't right to burden me with someone who belongs in a psychiatric hospital. I really couldn't stop crying.

I feel as if I try to stay upbeat. I put on a cheerful face and try to go about my day cheerfully. I give 100% in PT and OT. I get that I'm not in a private room, that I'm going to get a roommate, but I said to them, why put the lowest functioning person (the screamer) in with the highest functioning person (me)?

They called the social worker, more to pass the buck than anything, and the message from the social worker was that she'd "talk to Miss Luebke tomorrow" about it. I said to the screamer when I went back to my room when she said something, "Don't talk to me" I pulled the curtain.

The problem is she was in a wheel chair and it was blocking the door to the room's bathroom and I had to go. She refused to move. So I said to the nurse, "Tell me if you'd like me to use a bedpan or just wet my pants. What would be convenient for you?"

This aide took pity on me and said that the room across the hall (a private room) was empty and she'd open the door so I could use that bathroom. Makes sense, right? This toilet turned out to be a normal toilet and not the "commode" style like I have. Well, at least now I know I can sit and get up from a normal toilet so it wasn't a total loss.

Amy called and she overheard me saying that she was blocking the door to the bathroom and she protested (listening to my phone call) that she wasn't doing that. But she and her wheelchair made it impossible for me to enter my room's bathroom.

So after I talked to Amy, David called me and I left the room, went down the hall and talked to him. Then I called Brad who I had  called when this originally happened since Mary was at work and we talked and then I called Mary. I have since regained my composure, but I am on thin ice.

What scared me, and genuinely so, is when I was sitting in a wheelchair outside my room, I felt this scream forming in the pit of my stomach and I could hear myself coming out with this huge scream and I had to hold on not to do it, but I was close.

Now I'm back in my room. I ignored her coming in and she had partially opened the curtains between us and I closed it again.

I have to say that I had considered just peeing on the floor -- a nice puddle they could mop up -- it is so childish but you don't know what else to do to get someone's attention.

Tuesday, May 6, 2014

Tuesday Night in the Institution

A few measurable points of progress today. My coumadin (anti-blood clot) was reduced from 3.5 mg to 3.0 mg. The nurse was beaming as if I'd won lottery. I checked on the internet and the typical dose is 2 mg to 10 mg.

Had a real workout in PT. They removed the foot rests from my wheelchair -- I think they are unassembling it piece by piece. I have to give it up on Monday. That's a condition of release, that I not use a wheelchair. I did the steps in a right left right left instead of one tread at a time and the steps even looked smaller to me. Joyce, my PT woman, does have me practicing on a 10" wooden box for that first killer step of my apartment. I also walked to my room and back with the rolling walker without resting. Did the arm bicycle -- you pedal with your arms, did various things with this heavy yellow ball the size of a volley ball, and then various things with this iron bar.

One of the other therapists had his person using the iron bar which is about 2 feet long like a paddle as if her were paddling a canoe. I told him to close his eyes and pretend he's in the Adirondacks.

Breakfast was the same, except it was the bad bread. I am thinking that Wednesday is bagel day -- I've had their bagels twice on Wednesday for breakfast so maybe I'll be lucky and get one tomorrow. If it's not the rare bagel or the rare muffin, it's always this bad bread three meals a day. I don't even eat it any more. I used to taste it and try to anylyze why it's so terrible -- it's dry and stale.

It comes in white and whole wheat; each is invidually wrapped.

tbis is lunch -- Now I've forgotten what they called it. You could call it potatoes two ways -- potatoes in the horrible beef stew and then mashed potatoes too. Remember: this is not servied hot. I ate the mashed and the green beans.

And the above is dinner -- this was called chicken marsala but it's more like chicken stew -- with rice and the horrible farty broccoli. I ate the rice with some of the sauce. Again, imagine this cold.

These flowers came from my broker today -- really beautiful with white roses, dahlias? and some purple flower on a stem that smell great.

close up of the flowers

This is the view from my bed... from left to right are the now dead flowers from Tom and Michelle which I keep and water because they don't look entirely dead... followed by photos of my nieces and nephew; followed by a plant from Karen McC., I like to sleep with the curtains open just to get some sunlight.

Monday, May 5, 2014

Chaos in the Institution

Today, for some reason, the three elevators were broken so I didn't get to go to PT. I had to wait and wait for a shower, then wait for wound dressing... and it was 11:30 before I was ready to go. I went down to the day room on this floor and then came back to my room and did work-work. My sister came to visit and that was nice. Lunch was horrid... it was either battered fish or a veggie-burger. It smelled like fish, but the aide claimed it was a veggie burger. Either way, I didn't eat it and relied on a PB&J sandwich my sister brought. me.

So here are some more photos. You are not allowed to have a camera here or take photos, but I would never take any of other "residents" -- just my own world here.

this is the paper that comes with every meal... outlining what you're getting. This is the same breakfast I have had every morning since I've been here. The only change isx what kind of cold cereal (again with the foil pull back top) -- either corn flakes, raisin bran, frosted flakes (always a treat!) or generic rick krispies called krsipy rice. Don't get too excited over the muffin -- it's about 2inches by 3 inches. 
Here's dinner in person. Please bear in mind that it's typically cool to the touch, Ate the pasta, left the rest.

this is dinner -- as if the food isn't bad enough, the spelling is bad too. I don't think Beef O'Ronni is intentional. And who says applesauce is a dessert? Please not a drop more than 1 oz of sauce~!

I get a nebulizer treatment twice a day. This is the machine. They let me do it myself now. You break the two little vials and pour it down the mask, don the mask and inhale. It's all cool steam and you breathe for about 10 minutes until all the liquid is vaporized.

the machine on my nightstand

the mask and the vials

Sunday, May 4, 2014

Sunday Night at the Institution

I remember seeing a show about people in prison and one of the prisoners said he doesn't want visitors because it makes it more difficult to do your time. I undetstood that back then, but I really feel it now. It's difficult to have visitors and interact like a normal person, and eat the food they've smuggled in like a normal person, and feel like a normal person and have a normal conversation and then they leave and you're back to being an inmate in the institution.

Tonight I lost it for a while. There's a relatively new patient -- I think he came in last Wednesday -- and he's a screamer... this evening he was really screaming and it goes on and on and add to that the TVs which blare 24/7 at full volume. I don't need it quiet as a tomb, but I would like a few moments of silence. So combine the screamer who is two doors down with the TVs and my general disposition and I just couldn't stop crying.

Fran called in the middle of my meltdown and I answered it knowing it was Fran, but then I could not talk, just cried. It's not funny, but I appreciated that first she said in the kindest way, "Tell me what happened" and I couldn't and so she said, "you don't have to talk." So finally I regained my composure and filled her in on the screamer.

I think I was at the tipping point because I laid down about 4:15 and fell asleep and had my computer out and so I was awakened about 5 with the aide with dinner and I knew she wouldn't move my computer and there is no place else to put the tray so I had to sit up and I don't like be woke up like that... I like waking up at my own pace. Then I lifted the lid of the so-called dinner to see this:

I've been taking some photos of my "greatest hits" meals, and this is one of them. This is described as a salami sandwich, but it is an old, horrible looking and smelling slab of meat on a cheap hamburger bun with no condiments. Side order is "tossed salad" (aka iceberg lettuce) and commercial macaroni salad which has that slimy consistency. 
Just so you can appreicate the so-called "tossed salad" -- here's a close up -- limp, bad iceberg lettuce with one cherry tomato. It came with one ketchup-size packed of orange goo, calling itself "French dressing." Luckily I had a peanut butter and jelly sandwich leftover from yesterday.

As long as we're talking food, how do you like this one -- it's "chicken parmesan"

This photo doesn't really do the hideousness of this justice. Ok, first imagine it cold which it is, then imagine that fart-smelling aroma of overcooked broccoli stems and cauliflower. 

This is probably the worst one -- this is either "turkey burger" or "vegi-burger" --- again on a cheap hamburger roll, again with the farty overcooked broccoli stems and I think this was some kind of potatoes au gratin, but tasteless and cold.

And finally, to round off life in the instituion, all my clothes have my name in them on adhesive tape. It's all part of being institutionalized. This is my bra. Now I have to thank Amy for "reframing" the name tags for me. She patiently explained, "You don't want to wear some other lady's bra and you don't want some other lady wearing yours." That appealed to my logic. She's right, but it's still demeaning to put on a pair of underpants with your name in them. We can have a nametag removal party where egg drop soup is served when I get home!

Saturday, May 3, 2014

Saturday Night in the Institution

I just had a scare -- an aide came in my room and started fiddling with the empty bed and said, "I'm sorry." And I thought she meant, "I'm sorry you're getting a roommate." So I said, "What are you sorry about?:" and she said "barging in on you" and I said  "no problem!"

Today was probably my best day in the institution. Slept alone, woke up alone, ate breakfast, took a shower, worked on a crossword, ate lunch (and it was one of the only edible meals: Swedish meatballs with mashed potatoes and vegetables. Then I did some work-work. Then Phil came with some contraband, and we went outside for a while. Then he left and my sister, brother in law and kids arrived and we had a nice long visit. They left, I had dinner and now here I am. A nice restful day.

Karen is coming tomorrow and I hope to have a repeat of today. I can't tell you how nice it is to have a room to myself. It was nice with my visitors that we had the whole room.

Friday, May 2, 2014

Blessed Solitude in the Institution

So Chatty moved out -- lock, stock and rotting orange juice containers. An aide came to tell me that she asked Chatty why she was moving rooms and she told the aide that I (Pat) am "not her cup of tea." We laughed about it. Right after that, Brad called me who is a tea drinker and I told him and he said, "Well you ARE my cup of tea."

I feel as if I can exhale. I was so happy I even called my former roommate at home to tell her that I miss her and fill her in with my short-term roommate.

Who knows who is next to occupy that bed? At least I know tonight I'm alone. It will also be nice when I have visitors over the weekend to have some extra room.

One of the residents near me went ballistic this afternoon and kept shouting at a staff member, "Stay in your lane; stay in your lane." I had never heard that expression, but I like it... it's like "You can keep driving, but just stay away from me."

The hospital shrink came to see me today. I had asked to see a therapist the first six days I was here and then gave up. She said she was waiting to get her visit approved by insurance, which I appreciate. We had a nice chat and it was clear that I'm basically happy, articulate and well-adjusted. We had an interesting conversation about institutions, losing your identity, emotional needs being ignored, etc. She said,"All I have to do now is write a report about the visit with  you..." and I said, "I'll write it for you and I spurted out the perfect report-like prose, ending with. "Patricia eagerly anticipates her discharge and a return to independent living." She was laughing about it and urged me to contact her again for a visit. I might do that, just for my own interest.

I remember a poem from that play from the late 70s/early 80s called "For Colored Girls who have considered suicide" and it's like a series of monologue/poems -- one is "Once I was pregnant and ashamed of myself..." and there's another with the line "Someone almost walked off with all of my stuff" and it's basically about letting a man take your identity from you... and I think about that with the institution -- the days a few weeks back where I was genuinely scared because I didn't know who I was anymore.

There's a Harrison Ford movie with a line I love where this woman says to Harrison, "I don't even know who I am any more" and Harrison replies, "I know who you are." And one day, talking to Brad, I told him that I was going to say, "I don't even know who I am any more" and he should reply, "I know who you are" and he said OK, and we said it and then he launched into a description of me, how he views me, and it really was a turning point. I told him that today. 

I told the therapist today a story I've told some of you about being in the shower for the second time here and the aide handed me a white styrofoam coffee cup with orange stuff in it as I sat in the shower. I took a drink of it... hand me a cup with stuff in it, and Institutionalized Me would drink it. It turned out to be liquid soap. I look back and think today I would never do that. I would smell it or ask about it, but back then, I  just automatically drank it.

So I have eaten my "pizza supreme" (barf, barf: think of the worst frozen pizza you've ever had, which has sat out on a counter for an hour so it's cold to the touch) and now I'm going to watch Jeopardy, Wheel of Fortune, Restaurant Nightmares (with Gordon Ramsay) and Shark Tank. Then it will be my 10 o'clock bedtime and I can sleep all by myself and go to the bathroom in the middle of the night and make as much noise as I want.

Ah, it's yee-haw night at the institution.

O Happy Day in the Institution

Now that Chatty's old roommate who she didn't get along with has been discharged, Chatty decided she wants her old room back. She told me that "we didn't bond" and added, "I'm not saying you're a bad person; we just didn't bond." I said, "No, I'm not a bad person."

I allowed her to open the curtain between the beds (she claimed she needed it for "air flow") and she blabbed at me while we ate our lunch. Then I got afraid that I had been too nice and she would decide to stay. But right this second, two aides are moving her stuff. One aide says, "looks like you're going to be alone tonight."

Well, at least it's one night of peace.

Meanwhile, Chatty is a food hoarder. She has saved those plastic juice containers with the peel back foil top and I asked her isn't she afraid that the juice will go bad -- and here was her answer... "I make sure the foil hasn't bubbled up and, if it hasn't bubbled up, it's still good to drink." Oh, dear God. You really want to drink orange juice that hasn't been refrigerated for four days??

to be continued...

View from Mary's porch

When I was outside with Phil the other day, we also saw a cardinal.

Thursday, May 1, 2014

Nighttime in the Institution

Today was wound doctor day, and my one lone bedsore is down to 1.8 by 2.7 . That's centimeters, down from an alltime high of 5 by 7. I keep a list of drugs I'm taking and there are three of them, all for high blood pressure or so they tell me. Plus some others, plus some vitaminss. Plus some zinc sulphate which they tell me are for my electrolytes... whatever that means. My blood pressure was 110 over 70 this morning so I guess the stuff works.

Wben Chatty has no victims she can make their ears bleed with her ongoing prattle, she talks to herself, She's been on the phone for the past 30 minutes. In case you're thinking I should just ignore her... I am sitting on the edge of my bed, and I could lean over and touch her bed. That's how close she is.

She asked me earlier if I minded if she opened the curtain between our beds and I said, "Yes, I do. I want privacy." It's like feeding a stray animal. She knew me 30 seconds when she launched the story about her father's electrical wiring and I am discouraging future interaction.

It may be hard to believe, but the days go fast here. Karen is coming on Sunday. Phil is coming on Saturday. I am still longing for my egg drop soup.

Almost Dinner Time in the Institution

Phil just left, and I have to say he's quite a blessing. He makes me laugh. We went outside and it was great to be in the sun. All the women are attracted to Phil and flirt with him and I realize he is a good looking man, but to me it's just Phil. He also brought me a bagel with cheese so I won't have to depend on dinner to sustain me -- oh, and more Cheerios and some lollipops.

In the meantime, after I closed the curtain, Chatty was droning on to the aide and in a 15-minute period, she did a one-woman monologue (ok, that's redundant) and covered:
  • Hiroshima
  • A play by play of her mother's death ("and then we locked eyes...")
  • How she would wash her mother
  • How much Ben Gay her mother would use
  • How you can get toxic shock from Pampers
When Phil and I were in the lobby waiting for the elevator, this young African-American man blurts out, "I need to cuss someone out just to feel better." I told him I know exactly how he feels. Now Chatty is regaling the aide with how she can't use the room's bathroom because she is very particular and how there are feces on the front of the sink. Sure there is. So maybe she can be the pain in the ass who keeps the bathroom clean. She could annoy the paint off a wall.

I believe she is a hoarder as well. She has a bunch of shopping bags crammed with stuff in front of the nightstand/bedside table. She also has a collection of juices she's saved -- at every meal, you get this plastic cup of juice with the foil top that you peel back and she has about six of them on her rolling table. I don't know why that shit annoys me, but it does.

to be contined...

Thursday in the Institution

My roommate finally got to go home. First it was Tuesday, then Wednesday, and finally she made it out today. It was supposed to be 10 am and I waited with her until 11 am and decided I better get to physical therapy. I really wanted to be there when they finally came for her. About 9:30, someone from the ambulance company showed up and told her, "come hell or high water, you're going home today." So I went to PT and when I was in the lobby, I saw the ambulance and they were pushing in a stretcher and I knew it would be another 30 minutes so I just went to PT. Sure enough, when I got back to my room, she was gone. Just a bag of used bed linens in a plastic bag and a bare mattress.

My day started with a respiratory woman coming in the bathroom as I'm sitting on the toilet. I told her I can do the nebulizer myself and to just leave it for me. She said, "I have to assess you." That means I have to stick my finger in her oximeter. I wanted to say, "Can't I just go to the toilet in peace?"

She returns about 20 minutes later and I am in a dark mood. Just on general principals. I just want her to "assess" me and leave me alone. I was giving her terse, one word answers. Finally she says to me, "Do you miss being home?" I looked at her and for the first time in my life, I wanted to use the phrase, "you dumb b-word". Instead, I said, "You know, that's a really dumb question. What do you think?"

I go to PT and am happily greeted by James who grabs my wheelchair and pretends like he's kidnapping me. He told me that in the morning meeting, he suggested that he take over my PT from Joyce, how we have a good relationship and it would be good for me to have someone new. In the meeting, Joyce said, "You are NOT taking my favorite person from me." So James said they were fighting over me.

That made me feel good, not that I was being fought over, but as confirmation that I really am this pleasant, cooperative person if I am treated pleasantly and cooperatively.

Before I left, my roommate told me that I am a Renaissance woman (I don't think she really knew what that meant) and then added, "You like to get things done" and I sort of had to laugh because she's right. I like to get things done, and the inefficiency, laziness, etc makes me crazy.

I defied authority by leaving my banana peel on the tray today. I was sort of hoping that I would get in trouble for eating a piece of fresh fruit.  I wanted to see how they would justify it.

Meanwhile, I was enjoying my privacy post-PT and hoping I didn't get a new roommate, but my privacy was short lived. Standy by, folks, because I think this new roommate is going to push me over the edge. We'll call her Cathy, as in Chatty Cathy. She keeps trying to tell me these boring stories about her father and his electrical wiring or something She talks continually. She has 10 boxes of stuff with her. There's no way all this stuff will fit. You basically get a small closet (more like an armoire), a nightstand with three drawers and that's it.

Right now I am waiting for Phil to arrive with smuggled food... and he'll take me outside so I can get away from Cathy for a while. She just told them that she sleeps reverse, with her head at the foot at the bed. Oh goody.

I am also working on an article for a client where I'm about 2/3tds finished.

I just did something really bitchy. I closed the curtain between the beds. She is gabbing a mile a minute with the aide about something while this maintenance guy is whacking the foot of the bed, with a mallet trying to remove it. Enough is enough, I also have a bad habit of pretending to listen to people's long, boring stories and that only encourages them. I really want to say, "What is it that makes you think I care about your father's electrical wiring?" Really.

to be continued...