Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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What's Going On

First I have to say, I am so envious and in awe of bloggers who write wonderful posts every single day! I lead a much more boring existence…I am not nearly as prolific or witty. For that, I apologize to my loyal readers who keep coming back to the site!! Thank you all for being part of my life. I am trying to write more often, but this day-to-day stuff just keeps getting in the way!

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There’s Something Happening Here…

It has been rough going since the operation. I just haven’t felt right. If I had stopped to consider it, I would have realized I hadn’t felt right for quite some time. But this is how I deal with not feeling right: I ignore it.

I dragged myself to my den and got some work done each day, but kept falling asleep sitting there at my computer. I went to Physical Therapy, but sensed I made little progress because of the pain. I did my home exercises and started to feel depressingly certain that I would never regain total function.

As I am an obsessive glutton for punishment, I watched YouTube videos of shoulder surgery over and over, cringing at some of what I saw. Oh, not the cutting or the blood or anything like that. That I expected. I cringed at the stuff you tend to put out of your mind. Like how much of me was going to be exposed. Like how my body was going to be pushed and pulled, an unconscious dead weight. That there would be writing on my boob. No, not “Dr. W. was here”, which actually I think I would have found funny. No, these were lines indicating anatomical landmarks. So if the lines were used as anatomical landmarks, guess what had to be showing for the bulk of the surgery?

I cringed at the idea of the breathing tube down my throat, my eyes taped shut, my head strapped to a head stabilizer, my entire body, including my head and face, covered with surgical drapes. Everything covered except for the bits I would have preferred to be covered, however. The more I watched, the more upset I got. But I didn’t let that stop me!!

I also continued to feel crappy, very MS-y, twitching and wobbly. Then, just like last time, my legs blew up like two gigantic marshmallows. And it started to get a little hard to breathe sometimes.

You don’t have to be a nurse to put these pieces together and come up with this brilliant diagnosis: something is wrong here. But I just kept on my jolly way. Well, not so jolly. Just kept on my way.

…What it is ain’t exactly clear…

When I went for PT on Tuesday, my Physical Therapist Chris took one look at my legs and insisted I call my regular doctor before she even touched me. I called Dr. B., who I adore for his gentle and compassionate demeanor. But dealing with his front office person is a nightmare. Even though I told this loathsome creature I had just had surgery, my legs were swollen and I had shortness of breath, she intercepted any discussion with the doctor and gave me an appointment for two days hence.

I was just too exhausted to fight with her. Chris was pretty shocked, but she kind of shrugged. We did our PT session and I lived.

The next day I had an important meeting. I work from home, so I almost always wear sweats. But for this meeting I pulled a suit out of the closet and pressed a nice top to go with it. Went to put the slacks on and found there was a FOUR INCH GAP between the button and the button hole. It would not button. It would not even touch. Not believing my eyes, I dropped them, pulled them up again and, lo and behold, a four inch gap. I just wore this suit on Easter. Comfortably.

Little alarms began to jingle in the back of my head. This was not an ordinary weight gain. There was something wrong here. (Hmmmm…I detect a pattern…)

But in the meantime, I still had to get to this meeting, dressed in a professional manner. I yanked every suit and dress out of my closet. Nothing fit. I stood in the middle of my room, surrounded by clothing and howled:

FUUUUUUUUUUCCCCCCCCCCCKKKKKKKKKKKKKK!!!!!!

Because everyone knows that makes clothes fit better.

I finally dug up a knit pants set that was presentable at least. And stretchy. But my heart was pounding with fear. This was a pretty alarming sign. When I got home that evening, my daughter and I eyed my legs, which were now about three times their normal size. I was having trouble catching my breath. She looked me straight in the eye and said, you are going to the emergency room. I didn’t argue.

…There’s a man with a gun over there telling me I got to beware…

Here is a scary realization...I am starting to love the ER. They were super nice to me and did every test known to man. Tests that would have taken days, if not weeks as an outpatient, and yet I was home within 3 hours. Findings: no Pulmonary Embolism, no Deep Vein Thrombosis, no cardiac problems, no pulmonary problems. They chalked it up to positional, because I was sitting up for the surgery, and to a reaction to the anesthesia. I wasn’t so sure about that, but I was so relieved to have the other things ruled out I didn’t care.

Went to my regular doctor appointment the next morning. Told him my sad saga. Illustrated with my horrific legs. As he was asking me about what tests they had done, he was flipping through my chart. And there he finds a five month old lab report documenting a major issue with my thyroid being out of whack! A major issue that needed to be addressed then, no delay.

…Paranoia strikes deep…

I am really upset this was missed. For months I have felt like crap, for months I have blamed the MS. Now it seems as though I have a problem with a relatively simple fix that should have been/could have been initiated before the beginning of the year. It is going to take weeks to find the right balance of medications and in the meantime I feel like death on toast.

Although on the other hand, I get to say, in all documented truthfulness, “It’s not fat, it’s glandular”!

I soldier on.

…Into your life it will creep
It starts when you're always afraid
You step out of line, the man come and take you away


It's time we stop, hey, what's that sound
Everybody look what's going down
We better stop, hey, what's that sound
Everybody look what's going down
Stop, hey, what's that sound
Everybody look what's going down

-- For What It's Worth
Buffalo Springfield
1966

Direction?

The original idea of this blog was to create a site of mutual support and encouragement in being good to ourselves, especially with weight loss. My accident has morphed it into something a little different and I am feeling somewhat uncomfortable about that.

I am trying to tell myself that it still is addressing issues that others can relate to. I am not completely sure though.

I was not particularly good to myself after I got hurt. (Although I did eat an awful lot of ice cream. It was quite delicious. :) ) My typical denial in the face of incontrovertible facts slowed my acceptance of the truth: that I was terribly injured. And would be in recovery for a very, very long time. Possibly up to a year. Now that this is finally reality to me, I am doing my best to nurture my body and take my recuperation seriously.

I am eating well, I am scrupulous about doing my home exercises and attending my three times a week Physical Therapy sessions, even though they are so grueling I want to weep. Ok, I do weep. Physical therapy is really, really hard. Although Mike, my physical therapist, couldn’t be nicer or more encouraging. I have gone back to the gym and have gingerly done some pool walking and stretching, although I can’t actually swim for a while. I am resting when my body says I need to rest. I am listening to it for a change instead of telling it to shut up, it doesn’t know what it’s talking about.

When my MS symptoms flare up, I still get angry and feel sorry for myself that I am not the active person I used to be, Super Woman, capable of doing it all. But I also try to acknowledge, rather than ignore, yes, my legs are like jelly today, or my feet feel as though they are filled with lead, or I am so dizzy I have to hold onto things to get around the house, the Furniture Crawl.

Bottom line, I am not sure where this blog is going. I don’t want it to be all about me (that is a TOTAL LIE!! I would love it to be all about me. Isn’t everything?!? :) ) I want to post things we can all relate to in ways of being good to ourselves, even if it is just a moment to stop and think about things that are important to you. Or seem interesting. Or to simply have a giggle. Because if nothing else, everyone needs to laugh now and then. And I am a sucker for a good audience.

So for right now, I will probably write about random things, but I will also remember what I started out to do. The title “Nourish” really can be expanded. Because that actually is what life should be about. Nourishing precious moments, nourishing our precious selves and nourishing our precious others.

I would love some feedback as to what you all think.

Humbling Moments

One:

I had a follow-up with Dr. Wonderful this week. He looked handsome as usual. He asked how I was doing and I was thrilled to be able to enthusiastically say “I feel better!” And he said “Great. You look good.”

Now I have to tell you, this is not a statement that a fat, middle-aged, one-eyed woman hears too often.

So I replied with surprised and flattered glee, “Really!?!”. And subsequently observed his face recoil in unmitigated horror as he vigorously back pedaled. “I mean” he stammered, “It looks like you’re moving a lot better.”

Oh.

Gee whiz, it wasn’t like I was going to jump his bones or anything. No orthopedic pun intended.

Oh well. It did feel good for a millisecond.

Another one:

I met this lovely older lady at physical therapy. She is doing exercises similar to mine, but she's doing them better than me.

Naturally, I'm dead jealous and competitive and want to knock this little old lady over so she breaks her other arm and I will outdo her in PT.

Part of my gambit is to gain her trust and give her a false sense of security by letting her think I am a nice person and actually interested in her. So I asked her how long it had been since she had her surgery, because she was doing so well. Her answer: 3 weeks. THREE FREAKING WEEKS. You know how long it's been since mine? Eleven weeks! She's flinging her arm all over creation and I can't even…well, it’s personal, but you get the picture.

So then I ask her, what happened? Oh, she fell too. Only she fell in GREECE. At the PARTHENON!!!!

Not only is this lady running physical therapy circles around me, she has a WAY better fall story.

My friends had encouraged me to make up good stories to explain my massive scar: shark attack; stuntwoman accident; the Jersey Devil; freak onion chopping accident; knitting accident; tattoo cover attempt gone horribly wrong; squirrel attack while drinking martinis (don’t ask). So, they say to me, maybe she is making the whole Greece thing up.

Hmmmm. I never thought of that. Now that you mention it, she did look like a big fat liar even though she was only about 5 feet tall and 85 lbs.

Parthenon my ass.

So then my friend Graea in England says, “Sweet looking little old ladies get away with murder. She probably isn't even very old--just cunning makeup. I bet she's exaggerating her injury, too.” Hmmmm. I never thought of that either.

And best of all Graea says, “And no way can she have a better scar than you. You would make Genghis Khan feel like a big girl's blouse.”

No wonder I love Graea.

I have to go lie down for a little while now and not think about little old ladies with great stories who do better than me in physical therapy. And doctors who look terrified when they inadvertently hand me a compliment.