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.

Sigh.

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.

Did you like what you read? Let others know. Thanks!

The Dreaded Steroids

I am having a flare up of Transverse Myelitis, which was the condition I developed that led to my diagnosis of MS.

Ugh, what a bummer.

I am one of the lucky ones. Although TM initially paralyzed me, I responded to IV steroids and got better. Better-ish. It left me with lots of deficits, dysfunction, numbness and weakness. But some people never recover at all and are crippled forever. Some even need to be on respirators.

This scary stuff is caused by lesions on the spinal cord that strip the nerve cells of their protective coating, the myelin. It’s called demyelinating. Your level of illness depends on where your lesions are. My biggest one (yes indeed, I have an entire collection back there) is on my cervical spinal cord. That causes just sooooo many things to malfunction. Ahhh well.

An intravenous steroid, in this case Solumedrol (IVSM), is the thing that will calm the lesion down and make me feel better. But it comes with a price.

First, after a few days of steroids, I am, let’s see, how can I put it? A raving lunatic. No sleep, non-stop talking, non-stop activity. A VERY clean house. Let me tell you, this is not fun to live with. The one child (a 22 year old CHILD; oy) who still lives with me (who I am trying to pry out with a crowbar; does anyone want her?) just rolls her eyes. This will be my fifth course of IVSM in three years, so she is used to it by now.

Then there is the physical stuff. A hep lock in my arm for days, no showering, nasty taste in your mouth, potential kidney damage, potential bone damage, potential diabetes, aching all over like you have the flu and feeling like you have been hit with a truck when it is done. The first time I was on IVSM my blood sugar went so high I was on insulin for three weeks. Some people develop a ravenous appetite. Amazingly, I don’t. I actually lose my appetite. Cool.

But it usually does help, so there is that.

Maybe, as I am up all hours with steroid induced energy, I will write dozens of brilliant and witty posts for my blog!!! Now that is something to look forward to.

This is a short video related to Project Restore at Johns Hopkins, which is doing research to develop a cure for demyelinating diseases like Transverse Myelitis and Multiple Sclerosis. Alysse describes exactly what it is like to develop TM and the losses we experience when we have it.