Every time I think I never have to take the squirrel-on-crack-effect prednisone steroid again in my life, they think up some new excuse. Short term but massive, they want now.

I argued with the nurse. *I’d had a doctor give me a bedside lecture last year that despite my reaction to topical iodine, iodine is an inert mineral that, he said, it is impossible to be allergic to. A medical myth.  The stuff they mix it with? Sure. Iodine? No.

And so (just like last year just the same) they want me to take Pred and Benedryl for a CT scan so I won’t react to this iodine I can’t be allergic to.

I got nowhere. The nurse who called me to tell me had no idea. This is just how we do it, sorry.

Yes, and walking around with 80/40 bp and the like is how I do it, do you know how I react to Benedryl? Is it in my records?  Do you really want to depress that?

You know?  I think I’ve been more stressed about this than I thought I was.

Just before my first Stanford stay last year, when I was too sick to sit up, much less knit, the community at Purlescence filled a large basket for me of newly-picked oranges from Jasmin’s trees and yarn and handknits to cheer me on and to give me something to keep me looking forward.

One of those things was two skeins of Mooi from Nathania, Sandi, and Kaye–a blend with buffalo and cashmere that was probably one of if not the most expensive yarn in their shop. I was alive enough to realize and hang onto the idea of what a treasure they were offering me: in my intense pain and weakness, being able to anticipate specific moments of joy in an as-yet uncertain future.

How do you live up to that intensity when you’re puttering around happily back in normal life? It has been bothering me that I haven’t done that great gift justice. It kept waving other skeins ahead of it, going, no, no, you go on, wool, you’re fine, no problem.

It’s time.  I guess I can’t say I refuse to let this ongoing post-ops stuff buffalo me now.  This is lovely stuff, with a brightness to it that I didn’t see in the ball and didn’t expect as it weaves around my needles, and it didn’t even hit me till I started playing with it that those women had picked the color in their stock that matched my favorite teal-blue skirt they’d seen me in a million times.  Man am I slow on the uptake.

And now I can begin to really tell them thank you for that Mooi. At last.  It’s gorgeous stuff and it is a great comfort. Again. A CT scan? I was worried about a stinking *CT* scan, fer cryin’ out loud?! What was I *thinking*!

(Edited to add five weeks later: I talked to my radiologist brother-in-law, and he said that while one might not technically be allergic to iodine, it is very common for iodine to bind with various cells that one then makes antibodies against–causing a potentially dangerous and yes, allergic reaction.)

One of the often-wonderful things about a teaching hospital is this: someone came in first who introduced himself as Dr. X, but the title was a rather new pair of shoes still being broken in.  He was very earnest. He began to take a history. (Didn’t matter if they had all my history already, this was a skill I imagine doctors spend their whole lives getting better at: how to ask a patient for details, how to observe them in their responses, what the questions should be.)

This guy was bright and he was good and I said to my daughter afterwards, I can see why he got into Stanford.  I told him that since making the appointment two weeks earlier, the symptoms had eased; we chuckled together at that. It’s so often so true.  I told him that you doctors cure things simply by being there for us and ready, and there you go!

He was someone I knew I could say that to.  I say he was good, because I knew from the moment he walked in that it didn’t matter who I was, he wanted the very best outcome for me and he would do everything in his power to make it so.

And he was perfectly comfortable telling me when he didn’t know something (yet, I would add) when I asked him a stoma question.  I thought, that ready humility will serve you and your future patients well.

He was thorough; for instance, he wanted to know how my hearing loss came to be.

I told him about the baby aspirin incident. I felt, by his interested *Huh*!, that I was bringing his textbook learning to life. And again, when I told him about the LE cells in my biopsies eleven years ago at the Crohn’s onset.

He asked me how long I’d had lupus.

I took a deep breath.  So many stories behind a simple question.  And told him simply this:  I’d had symptoms since I was 13; I was diagnosed at 31. In between, there were a lot of “are you sure?” and it must be all in my head reactions, so, “I learned to shut up fast.”

He bowed his head a little and shook it, grieving, and said quietly, “Bad medicine.”

“They didn’t know,” I comforted him. And it’s true; it was much easier to diagnose when it all hit pretty much at once, rather than in bits and pieces scattered across the years.

The surgeon, whom I quite like, came in later, and it was interesting to me that the dynamic changed when I was in that gown now and the surgeon was standing as he talked to me.  Which is how it had to be, no quibbles there.  I didn’t want to waste his time.  I figured that what he wanted to know, besides any questions he asked me directly–since I have seen him at his own question-asking best and know he’s good at it too–he’d just gotten from the other guy.  I was keen not to make him late for his next patient sitting in the waiting room without even my pink-shawl knitting project for entertainment now (one elderly fellow had been quite taken with it), keen to deal with the most specific issues at hand and get them out of the way.

But I wondered afterwards whether I’d done that part as well as I might have or not. I don’t know. Could I have asked more questions? Oh, sure, always.  But he did a good job of taking the time to examine and observe and set my mind at ease.

So what I do know is, I came out of there very reassured that no, the Crohn’s is not back, and I have nothing to worry about.

And that one young new doctor was keen to learn from what I, too, had to offer him in my small part of his Stanford experience.

Well done, sirs.

Clara showed up a few minutes before eight and paced the inside of the
nestbox back and forth, finally stopping, head bowed with Little Boy
Blue's remains just in front of her. Her beak opened wide a moment, her
head went down, and she appeared to be trying to push it all down, down
into the gravel with the top of her head bowed way over. She came back
up with her empty beak closed.

Then she hopped out of the box. Flew to her sentry spot. She preened
just a moment, and then was away and out of sight.

Kekoa and Maya continue to hang out on the louver, Kekoa's face to the
building, Maya's in her back--wait, now she's looking around again. But
she's clearly no longer afraid of heights nor of standing on the edge
looking down. Cool.

Meantime, there was a two-hour hearing health to-do at our clinic today and I was curious to know what the latest and greatest hearing aids might be.  I decided to go.

I made it through the first 35 minutes of, this is what hearing loss is, this is what hearing aids are, and this–I guffawed out loud without meaning to, having gotten my first pair at 27–is why they won’t make you look old. The statistic appeared on their PowerPoint: 65% of the people who wear them are under 65!

Granted, I’m not new at this.  But I was disappointed that when the speaker talked about speech sounding like mumbling without hearing aids, she didn’t say outright that the reason is because consonants are higher pitched than the vowels because they’re made with your tongue against your teeth instead of vibrating in your throat. I remember what a revelation and how extremely helpful that one piece of information was to me at 18 when I was told I was going slowly deaf (it was an aspirin allergy, we eventually found out).  It all made sense now why I could hear someone and not process what they were saying.

Can you imagine some person there who IS old–the conference room was packed with old–who thinks they’re going senile when that’s all that’s the matter? I wanted to exclaim, Be merciful, woman, don’t dumb it down!

I escaped.  When one of the audiologists stepped out the crowded conference-room door in front of me, I followed her. She’d gone to the end of the hall to direct incoming human traffic if need be. Well, so I was the traffic, then: I had questions to ask, definitely, and no patience to sit through another 85 minutes of that, not even with my makes-me-look-old knitting.

The best thing to do, she told me, was go talk to the vendors set up outside in the courtyard.

Greaaaaaat… We peeked through the blinds together and she pointed out a particular table in the shade near the door–I later went to the guy and said, I can’t be out in the sun at all. You’ve got two minutes. He used his three minutes well. And I went home with the usual two temporary very small spots of white-out in my vision that are my first sign of sun overdose. Worth it. They have a music setting now… I need to learn more, but I’ve got the brochure and I’ve started.

Meantime, upstairs, as she and I talked, I got the impression she was enjoying being able to be really helpful and informative for someone who was motivated and who knew what she was talking about.  For me, I was thrilled at being able to talk about the health stuff that is part of the context without having a new person get all sorry about it–it just is, is all, move on.

She told me what I needed to know about cochlear implants should I have to have that next surgery (I’ve spent the last four or five days getting over yet another blockage) and should I again lose hearing from the pain meds–tylenol. I can do tylenol.  Which is not so good in the scalpel department.  I described the dilaudid going into the IV and the voices of the medical personnel around me going out.

I am a musician. A fairly deaf musician, but a musician. She told me the implants wouldn’t give me music quite well enough–but they would give me back speech. She talked about having to retrain the brain to hear again amidst noise, and I was like, yeah yeah been there done that a couple of times now I know all about that. But then, she said: for speech, my hearing would be normal with this.

She said it again for emphasis.  Normal.

I very nearly burst into tears on the spot. Which totally surprised me.

But would I give up music, really hearing music at perfect pitch, for life? No.

Which is fine because they wouldn’t give me the implants at Stanford without putting me through a bajillion tests to make absolutely sure I can’t manage on the hearing aids. And I can.

At least until that next surgery.

But now I have a backup plan for something that had had me in such great fear.  After having been told over and over in  years past (before the surgeries and the reaction) that cochlear implants would do me no good.

They would do me unfathomable good should I come to need them.  Again, I have a backup plan, now that I need one.  And I cannot begin to tell you what a relief that is.

So he worked out on his own a way to get rotating teams of his local colleagues in and out for a week each month.  His church, Abundant Life Christian, helped with the logistics as he was setting things up; even the local schoolchildren helped with the fundraising.

He was in the first group to go. They’re back now, and were giving a discussion on their experiences the other night. They described:

The group of patients on IVs, very ill, who surprised their caregivers when they broke out into song: a hymn, “How Great Is Thy Faithfulness.”

The baby near death of dehydration and pneumonia, who, given care, one doctor said, “It was like watching a flower bloom in time-lapse photography.” What was left unsaid was the unfathomable gift of being allowed to know they had saved a life–which, one by one, happened many times over.

The young mother, an amputee crushed in spirit, for whom they were able to reframe her situation: she had rushed back into a building to save her two-year-old.  One doctor said, “I told her she was a hero for rescuing her child; her life was made in that moment: that she would forever be a hero. I was able to help her interpret that.”

I love that.  The ability to see the power in our stories helps make us whole, and the gift of that physician seeing the whole picture, and giving it to that mother, changed everything.   For her and him both.

The sum of their thoughts was, Haiti is a place of hope, and that hope will save them in the end.

When I was a patient last year and very ill, I had a kind, calm doctor taking part in my care, the kind of man where you instinctively know you’re in good and caring hands and that, no matter how hard it is right now, you’re going to come out of this okay.

And his name was Enoch Choi.

Last January, Richard ran into our old friend C. at Stanford Hospital; she works there as a nurse. Her kids and ours grew up together, we’ve known each other for ages, and she greeted him joyfully.

And then she stopped suddenly and asked–Wait–does this mean Alison’s in here?

That shawl project I mentioned yesterday?

I bought the hand-dyed Cherry Tree Hill suri laceweight at the DBNY sale.  When it came, it was wiry in the hands and very thin and I knew it would never get knit by itself.

So I went looking for something to tame it and add weight to it.  I found two blue laceweights in my stash, one dyed by me, one dyed by Lisa Souza, that I knew would look stunning with it.

But I also had some 20/20/60 cashmere/silk/superfine merino in Verdoso from Colourmart that matched the fairly small bit of green in that suri. I’d already hanked, scoured, and balled it up, which you have to do with mill-oiled cones; it was in the color of life growing upwards in the spring anew.  It was so soft now and it was ready to go.

I liked the blue. I preferred the blue. I wanted to do the blue.

But the green said, simply, No. Me.

We argued with each other for a few days.

No, the green flat-out declared, I said me, and that, honey, is that.

Rargh.

And so I got started, and as I got the yoke worked on, I thought, you know, I think I’d still like that blue better–maybe I should just frog this so I could prove to that yarn that I do know better than it does, thankyouverymuch.

Green it was.  I tried to get as much done as possible before Stitches, and then, like I say, my hands had to rest for days after wheeling around there.

It was such a relief to be able to get back to work.  I put a fair amount of time into it yesterday and today, feeling like this needed to be ready–if for no other reason than that then I could dive into the fun new stuff.

And yet.  I’ve learned time and again that when something is that insistent, there’s always a good reason for it.

Maybe I shouldn’t blog the whole thing yet, just wait for the day I go to give it, while probably wearing a different one to offer to trade, because, you see, this insecure part of me always wants to whine, But what if she doesn’t *like* it?

And yet.

I had a doctor’s appointment yesterday and the nurse there exclaimed, Oooh, that’s *pretty*!

That helped more than she could know, and then, today, all the more.

The mail came this afternoon while I was knitting away.  A letter. It was from C.  She was throwing a party, bringing old friends together as she tries to do about once a year–and this time also hoping to raise money for breast cancer research.

For the sake of a young co-worker of hers. A single mom with breast cancer.

Who is a nurse at Stanford.

In a department I was in last January.

I had two nurses by that first name.  They saw me near death’s door. I am well now. For all their hard work and their caring, I am where I am now. I owe them all so much.

“Wear green!” said the invitation.

Oh, honey, and bring it, too.  I shall bring it, too. And I will tell that young mom that that green cashmere blend knew what it was doing.

And she will see me healthy.  I will take the colors of growth and new life with the first bluebell flowers of spring sprinkled here and there, and wrap them around her shoulders from all my heart.

In better news, Michelle, who’s been a recession statistic since her college graduation last year, landed a good job today that she’s thrilled to get and they are thrilled to have her. Go Michelle!

I joined the local support group to try to gain perspective from those who had already lived with this and who had experience dealing with it.  One of the things I heard there was story after story of the crazy things various members had done while whacked out on high-dose steroids: one woman described how she cringed at the thought of going back to her doctor’s office where she had shown up at an early hour in her bathrobe and slippers, pounding on the man’s door, screaming, completely paranoid and out of it.

Her doctor had shown up to work, come onto this scene, and told her worriedly, I think we need to decrease your dose. (Uh, yeah.)

And then she had had to live with that etched into the minds of all the onlookers who did not know that she was not, of herself, in any way like that and with her own vivid memory that she had, nevertheless, on those drugs, done that.

And so I utterly refused to take steroids.

Ten years later, I now had Crohn’s too.  I told my new gastroenterologist that I had always said I would never take prednisone unless it were a matter of life or death.  (I didn’t say out loud the feeling, and maybe even then… What if I did something totally crazy from the med and then died of the disease anyway? What memories would I leave my family then?)

But he knew.  Dr. R. held me steadily in his eyes and told me gently, “I think it’s time to give it a try.” And added, “I think you’ll be okay.”

In the moment he said that I felt that he was right. He was.

And that is how after all that anxiety and all that time, I at long last came to learn that my mental health stayed stable on those drugs.

But also that, as it turned out, I was the one-in-a-million autoimmune patient for whom they utterly did not work.

I know what the depth of pain is in being handed an incurable medical diagnosis that takes away every plan you ever had for your life.  (Give me sunlight! Give me the great outdoors!) But I was an adult, with enough experience to know I could adjust to the new situation and cope, and with four small children dependent on me to help keep me going.

And my brain was intact.

For me it was a choice and it was also pure good luck.

The homecoming prince. The good-looking guy. The nice kid. The big brother everybody looked up to and wanted to be around, who liked to laugh and who was so good with little kids.  Suddenly trying not only to cope with a major new diagnosis and with finding out that his entire future as he’d pictured it no longer existed, but now having no functioning mind with which to learn and adjust. He was out of it. He simply did not and physically could not comprehend.

At church today, people were searching for ways to rally around the family. I, for whom writing is like breathing, offered this: write down memories of our Brian.  The Eagle Scout. The ready helper.  That beautiful smile.  Remember out loud for his family the best of who he was and what he did. There would be so many stories; give them to his parents, his grandparents, his little brothers and sisters, his aunts and uncles and his cousins.

Tell the good.

Because that is who he truly was.

Wha-a-a-t! That’s not supposed to…! I just put that in there!

Context:  Blue Cross helpfully said there were no deductibles on ileostomy supplies this year. Given our $10k deductible and a no-insurance catalog price of $995/month, that was a huge relief. They don’t tell you the fine points during the November enrollment period, nor do they answer the questions they don’t want you to know to ask.

So I was going, oh good.  And then they said that oh by the way that one month supply that just shipped, same monthly amount as ever, was, as of this year, to hold me for the quarter.  Wait, *what*!  Are you out of your MINDS?!

And today, how stunningly bad an idea that was was staring hard at me.

It’s okay. My doctor’s office is on it. (But why should they have to be?)

Michelle was sitting in a cozy spot on this cold, rainy day.  First time I ever saw a bluejay shaking itself off like a dog, or a very soaked squirrel, but I don’t think either would have cared for an offer of a hairdryer. Brrr.

Wrapped up in a blanket, hot mug of cocoa on the arm of the chair, laptop propped up on the other one, safe from all ills.  It cheered me up just to look at her.

I plunked down at her feet. “Can I growl?”

She looked at me. “Okay, you got one minute of whine.”

“Stupid bag burst.”

“Oh,” wincing.  She thought about it a moment.  Then she threw her arms out from under her blanket in a magnanimous, wide-open gesture, and granted me, “For that, you may have TWO minutes of whine!”

We both burst out laughing, and that was the end of that.  Hey, Michelle–you’re a good one.  Thank you.

(Massachusetts voters:  60.  It’s all in your hands tomorrow.)

There’s a whole lot I didn’t write in that post a year ago today.  I didn’t say it was an emergency colonoscopy.  I didn’t say how the doctor wanted me to get some blood tests run, too, but after he saw what he saw he made a point of telling Richard to take me straight home afterwards and not put me through going to the lab that day. He was hoping all that bleeding he’d wanted so much not to see would quiet down enough to make it easier to go in the next day.

It was all downhill from there.

We got a letter in the mail, that, fittingly, arrived today of all days: announcing the new company that would be handling our by-mail meds, which, were I still on it, would have applied to supplying my Humira–you cannot just walk into a pharmacy and buy a biological Rx off the shelf.

So now we know.  Caremark has been kicked out.  YES!! (I tell myself I’m not bitter.  And yet.  It is still true that had they done their job I might still have a colon. Had Blue Cross honored their commitments on time I might still have a colon, not to mention points south requiring that second operation.  They did not.)

But a year later, looking back… All of that is honestly a very small part of the whole.

There is this sense that I can handle anything now.

There is this sense that I can be there for anyone else now.

There is the knowledge that there were people who were there for me through anything and everything, including, to the best of your abilities, so many of you from wherever you were.  You let me know I was not alone and not bereft in that hospital room all those weeks with needles in my arms and itchy plastic anti-blood-clot machines working on my legs day and night, that my mom and my husband keeping watch there and my children who were away weren’t facing this alone either.  I cannot tell you how important your presence in the comments and by your prayers were during those days, the squares that were knit, the afghans that were assembled, the cards that were sent, the Thinking Good Thoughts that got thought. Thank you.

There were doctors, nurses, respiratory therapists, even that housekeeper, who made me feel it was important to them that I had passed through their lives and thereby gave meaning to what I was having to go through.  In the process, they, too, strengthened my then-tenuous hold on my own.  How close I came–not that there was any doubt–was brought home to me when I got word two months ago that someone my little brother had grown up with had just had the same liver-inflammation complication of his own Crohn’s; he had not made it.  My heart goes out to his family.

I am intensely grateful to be here with my own family still.  Amazed at the things I can do now.  Intensely grateful at having had our kids home for the holidays.  Celebrate? Oh, honey, there are no words to say how much.  And it’s a whole new year!

A quick note–I hope I didn’t offend anyone, including Ms. Reddy, with yesterday’s bit of snarkiness.  A Mississippi Delta blues song that, to me, totally puts women down, sung chirpy and perky and with an Australian accent–it just didn’t work out well for me.

Okay. Moving along!

I did, however, put my friend Neil’s music on last night before going to bed and I sat in front of the speakers, absorbing the notes in just a couple of favorite pieces before turning in, reveling in how good they sounded with my aids adjusted to the new situation.  Planting something positive in my brain for future five a.m. half-awake brainstorm sessions. It worked.

Today I got a little knitting done in a waiting room: I saw my rheumatologist for the first time in exactly a year.  His nurse got me into the exam room and shut the door behind her before she exclaimed, “You’ve lost weight, haven’t you…!?” having no idea and clearly a little afraid to ask.

I hate having to fill people in from scratch and watching them wince.  But at least then she filled the doctor in for me.

He came in and got the details.  He did a fair bit of wincing himself, while I wanted to tell him, it’s okay!  But then, none of it was new news to me, and I deeply appreciated that what I’d gone through meant something to him.  (And her.)  I mattered. It showed in his face.  Thank you, Dr. F. And Nurse M.

I handed him the UCSF results and watched his eyes as he looked it over.  I told him that Dr. R knew steroids didn’t work on me, but there was no convincing the young doctors from Dr. R’s department working my case in his absence, who were sure that if you just threw enough steroids at that Crohn’s, it would tamp it down at last.  200 mg a day. (That is a breathtakingly high dose.  Granted, they were trying to save my colon and my life. Details.)

His eyebrows raised. “Did it?”

“It did absolutely zero.”

He allowed as how being as laid up as I’d been had contributed, too, but he made the diagnosis definite. Osteoporosis.  At 50.  Walk, he said, good that you’ve started walking again, take lots of walks. Some of the loss is irreversible, but some you can do something about.  And build that strength back up.

Another consultation appointment next week before treatment can/might start, the two doctors want to handle it together.  (Hurry, before we lose our current insurance policy Jan 1…   Don’t get me started…)