Good vibes.

I have a dear friend who is dealing with some serious health stuff right now. On Tuesday, she is getting some surgery and tests done. Try to think good thoughts for her, will you?

Dual citizenship.

Over at "The Seated View," Lene Andersen, responded today to a description of a book as containing stories about people dealing with chronic illnesses. She quoted from that description and responded to it:

And I quote from the Book Descriptions: "In 2003 Cohen published Blindsided, a bestselling memoir of illness. The outpouring of support revealed to him that not only does the public want to hear from people who overcome the challenges of illness, but that in the isolated world of illness, there are people who want their voices to be heard. Strong at the Broken Places was born of the desire of many to share their stories in the hope that the sick and those who love them will see that they are not alone each” (emphasis mine). And I got a little stroppy.

She goes on to explain "the stroppy":

Which brings me to the reason for the stroppy: that line about the overcoming (which isn’t written by the author, so I’m not dissing him). I looked it up and to overcome: to defeat, to prevail over, to surmount, to conquer. And that's the tricky bit, because traditionally, yes, the public only wants to hear from people who "overcome" the challenges of illness. They don't want to hear about the daily struggle unless it culminates in an achievement, unless you're the plucky kind, preferably pretty enough to qualify for poster child status, the one who can smile through the hardship, remind the great unwashed of how lucky they are to be healthy. And you know what? There is no overcoming of disability.

(Even though I have quoted a lot from her piece, you should read the whole thing.)

I am ready to confess that I have not (yet?) experienced living with a chronic condition like MS, or ALS, or arthritis, or Crohn's. But I am going to try to learn what I can from over a year of pain and a couple of spikes.

One thing I have noticed so much recently--and that Lene's piece made me think about--is how ready people are for me to be finished with my recovery. I have received any number of e-mails from friends saying, "I trust by now that your shoulder is back to normal..." or well-wishing comments from colleagues, making it clear that what they are ready for is good news. These comments are hard to hear, because, frankly, I am ready for it, too: who isn't, really. But after I smile at them and tell them how much better everything is, I feel like a big fibber, because I am also extremely aware of how far I have to go, of what is still wrong, and also of my fear (understanding?) that this recovery process will probably continue until something else goes downhill.

In The Body in Pain, Elaine Scarry writes about the inability of a person in physical pain and a person not in pain to communicate about it:

For the person whose pain it is, it is 'effortlessly' grasped (that is, even with the most heroic effort it cannot not be grasped); while for the person outside the sufferer's body, what is 'effortless' is not grasping it (it is easy to remain wholly unaware of its existence; even with effort, one may remain in doubt about its existence or may retain the astonishing freedom of denying its existence; and finally, if with the best effort of sustained attention one successfully apprehends it, the aversiveness of the 'it' one apprehends will only be a shadowy fraction of the actual 'it'). So, for the person in pain, so incontestably and unnegotiably present is it that 'having pain' may come to be thought of as the most vibrant example of what it is to 'have certainty,' while for the other person it is so elusive that 'hearing about pain' may exist as the primary model of what it is 'to have doubt.'

When the pain from my infection was coming on (I did not then know what the problem was), I called my then-orthopaedist's office for help. The nurse told me to take some Advil. I told her the pain was very severe. She said she would talk to the doctor and call back later. "Later" means two different things when you have a schedule to uphold and when (it turns out) you have a colony of organisms outgrowing and devouring your joint. Yet, I see upon reflection, this nurse probably gets many complaints of pain: it is easier and more natural (and probably even necessary) to doubt.

Looking back now on my account of that weekend of pain, I am reminded that I do not succeed in communicating the feeling of the pain. In fact, my memory of the weekend makes it hard for me to imagine that that account describes the same experience that I remember. As Virginia Woolf says, "English, which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver or the headache...." I do describe the various parts around the pain, and, I am ashamed to note, I do it all in the rhetoric of see-how-much-better-I-am-now. Well.

Susan Sontag writes:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Sometimes now I do feel like I was living abroad for a time, and even now I take occasional trans-oceanic flights, getting back just in time for some meeting or to teach a class. These days, my trips are less frequent than they once were, my stays abroad shorter. In fact, I can even think as the night-side kingdom as "abroad."

In my file of important documents in my desk I still have my c. 1997 readers' cards from the British Library and the National Library of Ireland, for whenever I need to go back. I expect that even if for a time I stash my night-side passport in that folder, it will never expire.

Now, with pictures!

WARNING: If you are squeamish about photographs of the insides of bodies, if you get grossed out by those scenes on CSI where they show bullets penetrating people's organs, or you are my mother, you may want to skip this post, as it contains arthroscopic photographs from my surgery.

I believe that in an earlier post, I told you that I had a SLAP lesion of the second type, which means that there was a distinct tear in the tissue that is supposed to connect the labrum to the glenoid bone. Sounds clear enough, but here is what it looks like:

(That is my doctor's handwriting on there, from when he was explaining the surgery to the PP immediately after it was finished, before I had returned to the land of the unanesthetized. The blue-gray thing in the upper right is probably a tube for drainage and suction during the surgery--yummy.)

My doctor was also able to see some effects of the infection from last spring. In this photo, the top white area shows how the tissue in question should look, but notice that the tissue in the bottom half looks kind of frayed. Thank you, infection:

The doctor did two things during the surgery. First, he used a couple of anchors (yargh!) to reattach the labrum to the glenoid. The anchors are the sort of sparkly blue things in the upper right:


(Again, that black line is my doctor's writing, showing the contour of the glenoid bone, in order to make clear that there is no longer a tear. Thanks to the anchors (avast!), the tissue can grow back there, making the connection secure.)

Then he shaved down a bone spur, to give my shoulder joint more room to operate and prevent further impingement:


(That one is kind of weird, I think, since it so clear where the bone was filed.)

All in all, it should take care of the problems. Meanwhile, I am gradually weaning myself off the oxycodone (after ill effects from trying to quit cold turkey. . .). And I am already tired of my sling.

Is it "Happy Birthday" or "Happy Thanksgiving"?

OK: it's official. In the latest installment of "My Shoulder Sucks: A Melodrama," I have a surgery scheduled for 20 November to fix the damned thing. Happy birthday to me. OR is it Happy Thanksgiving? It will fall smack in between, so why not both?

You might be wondering what exactly is wrong with my shoulder (I am too...). Apparently there is a tear in the labrum, and as I understand it, it is a SLAP lesion. (Read here about shoulder anatomy and labral tears.) This kind of tear will not fix itself; I have been trying to use physical therapy to strengthen the muscles around the shoulder, in hopes that that might take the pressure off the labrum and get rid of the pain.

But as I have thought more about this, and spoken with my PT, I realize that really it is not so much a question of whether surgery is needed, but when. So now it is scheduled.

I understand that while this is typically an outpatient surgery, I will be kept over one night, on IV antibiotics, to stave off a recurrence of the infection horror.

It is interesting: I can type this post without losing my mind in anxiety. That was not true on 21 September when my doctor first mentioned the prospect of surgery. This itself is progress.

WOO-HOO.

FORGIVE ME FOR SHOUTING.

IT IS JUST THAT MY PICC LINE IS OUT, AND I AM ECSTATIC.

I CAN LIFT THINGS WITH MY RIGHT HAND AGAIN, TAKE SHOWERS, AND IN A DAY OR TWO, GO SWIMMING.

I CANNOT LINGER HERE. I NEED TO GO HAVE A LITTLE PARTY.

PICC up the pieces (say what?)

I was thinking yesterday, as I was infusing my antibiotics, what an amazing piece of technology the PICC line is. Thanks to it, I do not need to have someone prick my arm and find a vein every time I need my antibiotics, and they can draw blood through it, too. Basically the way it works is that they put a needle into a vein in your arm, then somehow feed a lengthy tube up the vein until it reaches a more central vein. In my case, the intravenous line goes from the middle of my upper arm up to where my shoulder and neck meet. But here is what it looks like on the outside:




That little golden ball you see is the antibiotic, and these things are also amazing. They are sort of pressure-packed, so that as soon as I unhook the little valve in the tubing that connects the antibiotic bomb to my PICC line, the pressure of the ball starts pushing the drug into my body: no need for gravity to do the work, as with a traditional IV, and therefore no need for one of those metal carts you usually see with people on IVs.

Today we went over to the infusion center again, for what I hope to be my final blood draw. (Typically a home health nurse would come to the house to do that, but because I will be visiting my parents next week, that is not possible, and they must do blood tests and change the dressing on the line once a week.) There was a bit of a wait, because it was busy in there today. The PP was waiting in the waiting room (of all places), and got to talking with the other people waiting on people getting their infusions. (Many people either choose to--or must, for reasons of insurance--get their antibiotics infused in the doctor's office, so it is open seven days a week.) It turns out that everyone in there was there because of an infection that resulted from surgery. And I learned in the conversation in the infusion center itself, that one woman, whom the others call "Saint Teresa," had been coming in there since the fall of 2005. That is once a day, every day, every week, every month, for more than a year and a half!

The whole experience has made me both marvel at the achievements of medicine, and wince at the reality of how dangerous it is to be hospitalized. And it is all a lesson in patience.

Phenergans Wake: The short version.

There was one point this weekend where the nurse said, "I am going to give you the Finnegan injection first. That should help with the nausea."

"Finnegan?" I said.

"Phenergan," she said. It turns out to be an anti-nausea drug, not a major late modernist epic of surreal proportion. Though the experience was surreal too.

* * *

When I went to see the shoulder specialist on Friday, he determined that there was indeed an infection in my shoulder joint: hence some of the pain. In addition to the regular scary things about infections, particularly those caught in a hospital (in my case, the hospital where I got my arthrogram), the bacteria can degrade the cartiledge of the joint, so he wanted to get it out immediately.

Hence the surgery scheduled for Friday afternoon (i.e. cancelled physical therapy appointment, which, Joe, I believe might be the same as physiotherapy). So I went home and grabbed some things, and the PP picked me up and took me to a different hospital for the surgery. The checking in took a good long while, because it was short notice, but eventually we were checked in and waiting for a good long time in my new room (private!). They had to wait for my breakfast to be digested, and run bloodwork, and then wait for an operating room to open up, and then I had surgery around 6:00 p.m.

It seemed to go fine, and in addition to flushing the infection out of the joint, the surgeon got some "debris" out, which he thought might be related to the original pain. The whole procedure, including the knocking out and coming to, lasted about two and a half hours.

Then I spent the rest of the weekend and most of Monday in the hospital, letting the anesthesia wear off, taking pain medication, letting the wound heal so that they could take the drains out, getting my strength back so I could walk easily to the bathroom or up and down the hall a bit, removing the old IV line and putting in a PICC line (is like an IV but which can stay in the body for many weeks), and beginning physical therapy to get range of motion and strength back in the shoulder.

Now I am home, having come home last night around 7:30 p.m. I can hardly express how relieved I am to be home, but perhaps this example gives some sense: it is so nice not to have anyone come into my room at 11 p.m. (after I've been sleeping a couple of hours), turn on the lights, empty the trash, turn off the lights, and slam the door on their way out. Not to mention all the needle-sticks. And not to mention that for my first meal after 24 hours of fasting (with some IV drip I guess) was a breakfast consisting of a biscuit, sausage links, and grits. (Had no one heard of soup?)

But we are home. I still have a PICC line in, which allows me to get my antibiotics injected everyday, and it allows them to draw blood without sticking me yet again. Last night I had a bath! I am still taking some pretty prime pain meds and yes, the pheneran for nausea. I understand the antibiotics will probably go 2-3 weeks. In the meantime I do physical therapy 3 times a day, and a therapist comes to the house 3 times a week.

Just wanted to fill you in. Obviously I will not be thinking about swimming for a while, but once the PICC line is out, I may begin some water therapy.

The so-called results.

Just back from my appointment with the orthopaedist.

The OUTSTANDING news is that there is no rotator-cuff muscle tear, and no serious degradation of the biceps tendon. And all that means NO SURGERY. HUGE sigh of relief.

The bad news is that they cannot really tell why I am experiencing this pain, so it is back to physical therapy, which may or may not do anything. Apparently my labrum, which is a part of the shoulder that the ball of joint touches, I THINK, is stretched, but this probably is not the source of pain but rather a symptom of swimming.

The doc had a student with him today, so they did a lot of "palpating," which in regular human speech means touching the places where the pain is and moving my shoulder all around to see what hurts. All that, plus the leftovers from yesterday's arthrogram fun, mean that my entire left arm fucking hurts. I am wondering what the repercussions of an entire afternoon of bourbon drinking might be..... Probably would not put me in the best frame of mind for this evening's swim team banquet, which includes masters + kids team.

So I am really happy not to be looking at surgery, but profoundly frustrated not to know what to do. I do have an appt with a special shoulder doc for next Friday, so maybe he will have some more detailed or specific sense of things.

Oh, and no swimming for now, of course--but you had guessed that, hadn't you?

Ow ow ow.

One thing is certain: I would not be able to stand up to tortune.

I did successfully get my arthrogram + MRI done today, and, 4 hours later, I am home to tell the tale. The MRI was no big deal: as I explained to the tech who was giving me the earplugs, the PP's snoring pretty much sounds like that, so I sleep in earplugs all the time. And they do wrap you up pretty well before they send you into the magnetic tube, so it is pretty easy to hold still. And they give you a nice blanket, since the room is about 45 F. So all in all, not bad.

But the same cannot be said of the arthrogram. If you have never had such a test, it goes like this: they take an X-ray, then they use some kind of fancy camera to look at your shoulder (or whatever) while they try to figure out where to stick a needle, then they mark you with a sharpie, then they inject you with numbing solution, then they stick in the needle, inject dye (to magnify the contrast of various kinds of tissue) into the joint, take another picture, and presto you are done.

Well, presto, that is, if they can quickliy find the right spot to shoot in the dye. The doctor did mention that sometimes that is not so easy, but I figured I would not be such a case. I am sorry to have to tell that I was indeed such a case. I was not allowed to wear a watch during the procedure, and if I were I am sure I would not have been allowed to consult it, but I can tell you that however long it took, of moving the spinal needle around while it was stuck in my shoulder, and trying to get it readjusted, and all amidst tissue that has not been feeling the best lately, seemed like an eternity. Even with the numbing, you still of course feel quite a bit, and it is that horrible metal on tissue feeling, combined with the fun probing feeling. Combined with eternity.

But now the procedures are done and I am off to my massage appointment, which I have been anticipating all day, although she'll have to avoid all the little bandages and injection points. And tonight may be one of those nights that requires its share of scotch.

Results tomorrow, gods and goddesses willing.

Thanks.

No, this is not going to be a "thank goodness nothing new started hurting overnight" post.

But I am thinking about what it is we feel thankful for. I cannot list everything, or you would spend the entire day reading my various thankful blog posts, instead of watching football as you should.

Right now I just want to say "Thanks!" to the Yale hospital folks who figured out what was going on in my uncle's heart and got it patched up. It really is remarkable, when you think about it, that doctors can send one of those tiny cameras up an artery from somewhere near where your leg joins your body, and look around inside your heart. THEY CAN LOOK AROUND INSIDE YOUR HEART, WITH A LITTLE CAMERA. Then they can take a little tube, put it inside the part of your heart that is not staying in the position that it should, then send the world's tiniest balloon in pump the tube up to where it should be. Are you pausing with me for reflection?

One of the real highlights of this fall was the phone conversation I had with my uncle, the night after he had this procedure done, a full day after he had gone to the hospital because his pulse would not come down. I can so easily go back to the moment of that conversation, sitting by the little gas fireplace in my study, wanting to physically feel the warmth that I both needed and received from hearing that he was going to be OK. It was one of those magical times when you believe and really do feel that a telephone can make a connection with someone 833 miles away.

So I am thankful for that voice-carrying technology, and for the new technology inside his heart ("a stent in my heart to match the bolt in my wrist," he said). And I am thankful for my uncle, and for the chance to have more conversations like that one.