Friday, February 22, 2013

Accentuate the Positive

A week plus and I am feeling stronger.  It seems as though something unlatched a little and I can breathe a bit better.  PT and OT are definitely helping.  And I cannot say enough good things about the therapists themselves.  There is respect and caring for each patient as an individual.  They are very skilled but still earnest and encouraging.   My primary physical therapist laughs at my jokes, so he was an instant win.  Truly, almost everyone else working here is incredibly pleasant and helpful.

Because they are only people, there is the odd one or two lacking that balance of expertise and warmth.  I was sent for pulmonary rehab to see if it would be helpful.  Four of us were wheeled into a therapy room and pretty much ignored while the therapists discussed their plans.  Finally the Leader spun around and said, as if she was addressing imbeciles, “Ok, who remembers what we learned yesterday?”  Of course, ever the wise ass, I started to answer with a grin, “Not me!” (I hadn’t been there the day before).  Before I could get out two syllables, she said loudly, without even looking at me, “Except you Mrs. Cooper.”

Well hush my mouth.

She clearly found me irritating and, correspondingly, I couldn’t wait to get out of there.   I won’t be going back.  Besides the fact she is the only flat-out surly therapist I have encountered,  it really was redundant to what I was doing in PT.

I have to deal with many tiny aggravations every day.  There are big ones, too, including facing the fact that my health is failing.  But there are highlights that stand out from the past few days, things that seem minor but actually are huge in the scheme of things as far as making a difference goes.  They are small acts of kindness that provide proof of the goodness of most people.  Referring to them as small seems like a slight, although these ordinary things are often unnoticed or unseen.  But they carry so much power.

While I was in the first hospital the aide was in the room taking my vitals at about two in the morning.  A tech ambled by in the hall and she called out to him.  He backed up and was clearly pleased to see her.  “Hey girl!”  She went into the hall and I watched the two of them talking and laughing.  He was adorable and funny.  When he left, she came back and told me what a sweet guy he was.  I told her how cute he was.  A few minutes later, he strolled by again.  “Lamar!” she called, “My lady here thinks you are cute.”  He shot to attention and put on an exaggerated flirty performance.  He danced like Conan O’Brien and made up a rap song on the spot singing my praises.  The aide and I were in stitches and it really raised my spirits, he was so young and so sweet.  She chased him away and as he left he gave me the ‘call me’ sign. Too funny.

The first night I was here in rehab, I was literally too weak to even clean and dress myself.  My nurse’s aide bathed me in bed and changed the bed at the same time, totally matter of fact and kind.  I am used to feeling mortified and bereft when I am so helpless, but she was so sweet it felt like an ordinary, everyday thing.  And let me tell you, having someone one third of your age say “Ok, honey bunny!” as she finishes getting you dressed is in no way condescending.  It made my day.

My first roommate was very infirm and uncommunicative.  I suppose people thought because she didn’t say much, she was deaf.  Which she wasn’t.  But people yelled at her all day long.  “Mary (not her real name) eat!!”  “Mary swallow!!”  “Mary pick your head up!!”  “Mary, what is the matter with you?!?!”  “Mary, do you want a Xanax?!”

One night, the night shift nurse brought in her meds.  She quietly asked Mary how she was.  Mary replied, “Not good, I’m very nervous.”  Instead of screaming at her did she want a Xanax, this nurse sweetly said, “Well, we have something I can give you to make you feel better.  Would you like that?”  Mary said yes please.  The nurse returned and helped her with water.  And then she said the most incredible thing:  “Would you like me to sit with you until you feel better?”  Her demeanor seemed to have made all the difference, because Mary calmly said “No thank you” and drifted off to sleep.

And then there are the visits from my friends!  People who lead such incredibly busy lives, taking the time to come and sit with me, bringing me fruit and tea, my two favorites!  Sometimes my PT/OT schedule conflicts with visits, but that is the primary reason I’m here, so I have to do the therapy.  But people are even coming back if they have missed me!!  Incredible.  Our new interim Rector, who I had not even met, has visited me several times.  So generous with his time and prayers.

My granddaughter is two and obviously doesn’t understand why I am not home or what this place is.  But she was SO happy to see me when she came to visit!!  She hugged me and hugged me, saying “Grammy!!! Grammy!!!” over and over.  I can’t wait to get home and be with her again.

Can't wait to be home with her again!!
These ordinary people and ordinary actions are really what make a difference in our lives.

So there is a lot of hard stuff going on, but a lot of good to balance it.  Despite the hard stuff, I am a very lucky person.


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Saturday, February 16, 2013

Rehab Abbey

All the testing in the hospital has determined that the muscle which helps my lungs breathe in and out is partially paralyzed.  The steroids are helping and my breathing has gotten a little easier, but I am still short of breath with exertion.  Since the problem has responded to the Solumedrol, right now the focus will be on building up my strength again.  During the week I will talk to the doctors about what we are going to do the next time this happens.

As usual, I have had gobs of amusing little episodes along the way.  I've illustrated my reactions as channeled by Maggie Smith as the Dowager Countess.

The respiratory therapist gives me my ventilation treatment and then decides he will do a little respiratory education.  “This treatment can really dry out your mouth.” he says.  I nod gravely to show I am a smart person and to express my profound comprehension.  “If that happens….”  I wait for his nugget of brilliance, “…drink a little water.”  Alrighty then.  Write it down.  Straight from the expert.  If your mouth feels dry, drink some water.

Then I am off to rehab.  Discharged from the acute hospital, I am transported in a wheelchair van by a very nice man to the rehab hospital.  By the time I get up to my room I am exhausted. I am brought a tray with dinner but I can barely eat it.  I just want to sleep.  A VERY PERKY nurse comes in to admit me.  She is firing questions at me a million miles an hour, so fast I can barely answer.  “Any skin breakdown?” she barks.  Before I can reply she whips down my drawers!!  She’s faster than my high school boyfriend.  Oh, why me Lord?!?

One of the aides at the rehab facility is an extremely tall, thin, striking looking African woman.  She is exactly what you would picture an African queen to look like.  Perfect posture and regal bearing.  Her voice is deep and melodious, although she does not speak often.  She does not giggle and laugh with the others, she has an innate elegance that I find fascinating.  One night she comes in to help me get into bed.  She swings my legs up and over effortlessly but then looks at the floor...  “This is powder spilled here.” She says quietly.  I am mortified and apologize profusely.  “Oh, no, it is fine, I am going to clean it up.”  She comes back and tells me how dangerous powder on a tile floor is.  It is very slippery.  I keep apologizing but she assures me she just wants to let me know to keep me safe.  “There is something even more dangerous than powder,” she says solemnly.  “Really?”  I am sure I have spilled this substance or will in the near future so I am hanging on her every word.  God knows I don’t want to be the one responsible for a freakish outbreak of slips and falls in Healthsouth.  “Yes.  It is…banana peels.”  I just stare at her.  I am thinking she is making a joke, but her fascinating face is perfectly straight.  “Banana peels are so dangerous.”  She acts out a little accident with her hands.  “You step on it with your foot and your foot will go flying out from underneath you.”  She has literally rendered me speechless.  “Wow.” I finally say.  Banana peels are dangerous.  Who knew?  She slides quietly away into the night, ever on the alert for banana peels.  Thank goodness.

The floor starts to quiet down and the lights are lowered.  My roommate is sound asleep.  I doze off, something that is usually really hard for me to do, and I am jerked back awake by a raucous burst of laughter.  Peering at the clock without my glasses, I can see it is in the neighborhood of 9 p.m.  I am irritated, but doze off again.  Am wakened once more by a shriek of laughter.  It is 9:45 p.m.  I doze again but wake up to a screech and more laughter.  It is 10:30 p.m.  Visiting hours are supposed to be over at 8.  Now I am pissed.  I ring the call bell and an adorable young nurse’s aide responds.  “Do you need something?” she whispers sweetly.  “That bunch over there is really disturbing me.” I reply.  She looks over at my 90-something roommate, who is out cold and silent in her dark side of the room.  “This bunch?” she asks, gesturing to no bunch what so ever.  I look at her for a second to see if she is pulling my leg.  But no, she appears to be completely serious.  “No, the bunch across the hall that is laughing and carrying on as we speak.”  “Oh,” she says with a kind smile, “they have been allowed to stay because it is a young person.”  Ahh.  A young person.  That must be the one I heard shriek “OWWWW, cut it out Mom it really fucking hurts I’m not kidding.”  Charming child.    It really sounds as though she needs the comfort and care of her mother. 

I had been told by the OT Director that I needed a lower bed.  After three days I still do not have one.  They don’t want me to go to the bathroom without an aide, but if I wait for someone to respond to the call bell, I won’t make it.  So I am told I will get a bedside commode.  Three days gone, I still do not have one.   I always check “tea” on my menu, but I usually get a cup of coffee and a tea bag.  The aide working this morning offers to get me a cup of hot water.  I am so grateful!!  I give her my ceramic cup (a gift from a loving, thoughtful friend) that I last used yesterday.  She returns ten minutes later with the dirty cup, with several rings of old tea, full of hot water.  It never occurred to me that I had to explain the cup, which had the remains of tea in it, needed to be washed.  I feel like crying.  How can I be upset when she was nice enough to get the hot water?  But why would she not wash out the cup?!?   

The family of my roommate, along with her aides, drives me crazy with their noise and thoughtlessness.  They have the television blasting constantly and have no consideration for any one besides themselves.  But she herself is a quiet little lady who minds her own business.  I think they drive her nuts too.  One the rare occasions she is alone, a physical therapist comes to pick her up for therapy.  “Hello Mary!!” he sings.  Her name is not Mary.  He adjusts her, gets her into her wheelchair, all the while calling her Mary.  Finally I say from my side of the curtain, “Her name is NOT Mary!”  A young Philippine man sticks his face around the curtain, studying his list with puzzlement.  “But she answered to Mary.”  He looks a little more and sees her on his list, her name slightly different from Mary.  I don’t say anything more.  I think not responding to her proper name was “Mary’s” little rebellion.

Yesterday afternoon, I called for my break through pain meds.  No one brings them.  I ring again after 45 minutes.  But by then it is time for my heavy duty med, so I decide to wait it out.  At ten I ask for the break through meds again.  At 10:30, I ask for them again.  At 11:10 I ask for them again.  At 11:20 the nurse brings me one tablet, half the dose, PINCHED BETWEEN HER BARE FINGERS.  That’s right.  No med cup, no identifying packaging, no gloves, just two fingers and a pill.  You know what?  I am simply too tired to fight with her.  While it is up there, it is not the absolutely worst thing she could do.  I do tell her that is just half the dose, I need the other pill.  And back she comes again with the bare pill in her bare hand.

Why do I have to be the cranky cow who complains?  Why can’t I be patient and kind?  This is why I hate people.  They make me feel bad about myself for hating them for being horrible.


On the plus side, I do like the staff a lot.  They appear concerned even when they don’t follow through right away.  The physical therapists seem really responsive and encouraging.  I am looking forward to working with them.  If I can get past all the other stuff.


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Thursday, February 7, 2013

Here I Go Again

For five days it has been gradually harder and harder to breathe normally.  So here I am again, short of breath (SOB, there are so many who would agree), in the hospital, miserable, scared and set up for hourly mortification. 

It started when I called 911 and the first officer arrived, around my age and handsome as heck.  He cocked his head contemplatively, sniffed a few times and I waited for him to say how nice it smelled, with all my candles, potpourri and assorted lovely smelly thingies.  Instead he said “I smell gas.”  Mortified.  “I don’t think so”, I replied.  “Oh, well, I guess it’s just the cat box.”  THE CAT BOX?!?  “JESUS!!” I gasped (remember I am short of breath) “Are you telling me my house smells like a cat box?!?!?!”  He shrugged.  I babbled.  It must be the work we just had done.  It must be the paint.  It must be the sump pump.  He smiled politely.  His face said “Whatever lady.”

The EMT’s arrive, one of whom had transported me last time.  They did a painfully slow intake.  Decided they would help me down the brick front stairs and onto the stretcher right at the bottom, rather than haul the whole thing in.  I was wearing a cotton housecoat,  no makeup, hair in every direction, and, mortifyingly, stretch gray hospital socks with rubbery spots to keep you from slipping.  I looked like a homeless person.  Mortifying.  I am in open view of everyone driving down Sunset Avenue, with an average of thirty cars going past a minute.  Mortifying.  I can lower myself onto the stretcher, but I am too weak to lift up my legs, so they have to do it for me.  Mortifying.  Then they transport me just like that.  It is SNOWING, but they don’t even put a sheet over me.  I am too upset to speak up.  FOR FUTURE REFERENCE:  Every sick person needs to have an advocate with them.

Get to the hospital.  I am told to ‘scoot’ over from one gurney to another.  My scooting days are long over.  My legs are way too weak to push me over.  Using a sheet to lift me, it takes them THREE tries to move me.  I know it is because of the angle they are at, (the gurney I am to land on is flat against the nurse’s station) but it is still mortifying.

The tech comes to put leads on my chest for an EKG.  Women have these things on their chests, commonly referred to as breasts.  Most women, with a few notable exceptions, prefer to keep these breasts covered.  I belong to the second category.  The tech proceeded to whip up my nightie and expose everything I owned to the world.  I tugged the sheet up, he pulled it down.  I tugged it up, he down.   Up, down, up, down.  The test was over before I could completely succeed in keeping myself covered.  Mortifying.

I am using the commode in my little ER curtained cubicle when a colleague of Mary Kate’s (my daughter) opens the curtains wide and, smiling hello, slowly puts my registration paper work on the over bed table looking at me all the while.   Mortifying.

A very sweet young Eastern Indian resident is assigned to admit me and take a complete medical history.  She is nervous and thorough and so scripted I feel as though I am talking to someone in a call center.  Her questions stumble over each other like dominoes, “Uhm, ma’am, so what was your, uhm, first symptom of multiple sclerosis? “  I barely answer before the next question comes “And, uhm, ma’am, what medicine did you take at the time?”  Answer. “Ok, and uhm, ma’am, why are you carrying rope in your bag?”


I look over at my tote bag to see what the heck she is talking about.  This is what she is seeing:

I look at her incredulously.  “Do you mean my knitting?!?”  She looks at me as though she has caught me in a whopper.  “It is yarn, I am knitting a hat for my grandson.”  I am tempted to say “I am carrying it around in case I decide to hang myself", but I am afraid she will take me seriously.  Ending up in the psych wing would not be so bad, but I am afraid she might confiscate my ‘rope’.

I am sent for a nuclear scan to rule out blood clots in my lungs, a common cause of shortness of breath.  By now it is about 9 p.m. and I have been at the hospital for six hours.  I am tired, in terrible, constant pain from the lymphedema in my legs and still gasping for air when I exert myself for the least little thing.  For this test I need to lie flat on my back for about twenty minutes on a hard, thin slab of plastic.  The administer of the test is an impeccably dressed, very formal but very nice Eastern Indian man.  He is also very small, and despite the fact I am only 5’3”, I get the sense I could squash him like a bug.  He explains the very simple and painless test to me, but when he gets to the table part I look at it and then back at him dubiously.  I explain I cannot lie on my back for more than a few minutes without significant pain.  The shortness of breath is also worse lying down.  And finally, once I sit on the table, there is no way I can swing up my legs by myself.  Each of them, grotesquely swollen with edema, appears to be the size of this man.  He assures me he can get my legs up, we will put a wedge under my knees and all will be well.

Sadly, he was completely and totally incorrect.

Within five minutes I had screaming pain in my back.  The more the pain increased, the more my anxiety increased and the worse my breathing got.  This was all open, nothing like an MRI, and he was continually reassuring me and counting down the time.  He was so solicitous.  But soon I thought I was going to throw up.  Then I had to raise my arms over my head.  No can do with a right shoulder that has a joint replacement.  Precious minutes ticked by as he puzzled over positioning my arms and still getting a quality picture.  By now I was crying and my breathing was ragged.

Finally, it was over.  Apologizing all the while, I involuntarily screamed in pain as he helped me sit up, Even sitting up, I was having trouble catching my breath again.  He helped me onto the gurney.  I was completely panicking, as I was having a harder and harder time breathing.  It felt as though my lungs were completely immobile.  Hysterically, I popped up off the gurney in a standing position, frantic to get air.  He looked on helplessly.  I looked at him and gasped “Please…get…someone…to…help…me!!”  And Holy Mary Mother of God…I was coded.

In medical terms a code is called when someone is in desperate shape and they don’t want to announce that fact to the entire hospital.  “Code Red on Brennan Six” sounds so much better than “Guy thrashing on floor on Brennan Six, turning purple we think he is a goner come quick”.  The thing is, most people are now fully aware a Code Anything is Bad News.  They’re no dummies, they watch TV.  Mine was a relatively low level code, a Rapid Response Team.  “Rapid Response Team to Nuclear Medicine” echoed overhead, as I had heard dozens of time before (always saying a prayer for those involved, lives that were usually in the process of being irrevocably changed), but now it was, incredibly, for me.  Within minutes I was surrounded by eight Saviors in White Coats – who stood by and did nothing but ask me questions and told me to calm down.  But they did do this very, very nicely indeed.  I looked at them while I wildly tried to get air into my lungs.  “Breathe slowly”, they said soothingly.  “That’s it?!?!” I thought.  How about intubating me?!?!  Or a trach?!?!  Or rub my back?!?!  Or cut off my head?!?!?!  ANYTHING TO GET AIR INTO ME!!!!  

But they did none of those things, just got me back on the gurney.

Then, for extra comic relief, my little Asian admitting doctor burst through the door with her arms spread wide.  Everyone in the room towered over her by at least a head, and they all swiveled to look at her as she gasped "This is my patient!  I know EVERYTHING about her!!!"  There was a moment of silence and everyone went back to what they had been saying, totally ignoring her.

We headed back to the ER for another EKG and who knows, maybe a foot rub.  I sputtered out “Maybe an anti-anxiety might help?”  Ohhh, no, no, serious group murmur, murmur, murmur. You would have thought I asked them to go down and score it on the boardwalk.  “No, you just relax” they replied.  And I think chemicals would go a long way in accomplishing that, thank you very much.  

In the elevator, the Team Lead was going “Blah, blah, blah, Ativan, blah.”  ATIVAN!!  Now there was something I could wrap my brain and airways around.  Finally.  But they were so busy in the ER when I got back down there, my little Ativan got lost in the shuffle.  It was up to me to fix my own breathing, which by now had started to settle down but I was still panting on 6 liters of oxygen.  (For lay people:  that is a lot of oxygen.)  The team scurried away to document the event and how they saved my life without even sullying their immaculate white coats.

I sat on my gurney gasping, praying and silently begging forgiveness from the kind little man whose evening I had, if not exactly ruined, had certainly put a dent in with my weeping, my pleas for help and screams of pain.

Yikes.  This was just the first night.


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