I got told to take some benedryl this morning and a massive dose of prednisone, which is a steroid, last night, prior to coming in for the CT scan, due to previously having had an allergic reaction to topical iodine. I wanted to argue with the radiologist that I’d been told by a doctor in the hospital, prior to a CT scan there, that iodine is a mineral and one cannot physically be allergic to it, only to what it’s mixed with.  But I decided, eh. Just make them happy. I took it.

Good thing.  Yesterday evening I’d been back to serious pain, holding my stomach to be able to walk down the hall.  Took the pred, went to bed… And although I was quickly wired to the max, the pain, I suddenly realized, was almost gone.

It was absolutely stunning. Pred has never touched my Crohn’s, ever, at any dose. They had me on 200 mg/day via IV in the hospital, and, nada.

I had a longstanding appointment anyway with my surgeon for right after the CT scan, and she was delighted.  “Different body parts sometimes respond differently to the same med, and you’ve only ever had Crohn’s in your colon before.”

She thought she saw a Crohn’s spot on the small intestine in the scan; the radiologist’s preliminary report didn’t think so or didn’t catch it.  Two pairs of eyes is a good thing. We’ll see how that settles out; as the surgeon cautioned, “I’m not a radiologist.” (Ed. to add: they talked, the radiologist went carefully over it again, and said no, it was normal. There is another test that could be run, but Dr. R will have to order it when he gets back.)

But there is now a definitely-maybe hope of being successfully treated. I can’t tell you how good that feels.  It’s not gone, but I’ll take all the improvement I can get.

Oh, and, I tried to knit my Monterey shawl during the long wait between the half dozen large paper cups of dye I had to drink and the actual scan, I really tried. But benedryl and no sleep and a complex pattern–I got about a dozen stitches into a row, shook my head at a mistake, couldn’t see what I’d done for the life of me–that’s when you know I’m drugged out–and tinked back to the beginning and stuffed it back in my knitting bag. I had carefully packed a spare ball of yarn and needles just in case, picked it up, and launched into a scarf in the Michelle shawl lace pattern.  Something utterly brainless, silk and merino comfort knitting to comfort someone else by.  So many people have knitted for me lately.  Time to get back to work on giving back.

I got in today.  The nurse on the phone sounded again reluctant, at which point I played the trump card of the Urgent Care doctor having said upper-GI inflammation and that I was to be seen in GI on Tuesday.  Oh. She let me in.

I adore the doctor I got in to see.  Nancy, she’s the one your shawl went to. (And she was not there Friday.)

It might not be a new flare; it might be an adhesion from the surgery. Or a fistula. Or even another blockage (don’t think so).  CT scan tomorrow with the requisite fasting and pre-procedure meds.

Meantime, here are a couple of chick flicks for those so interested. The second is of last year’s banding, with the parents screaming past the guy’s head every few seconds–you can tell why he’s wearing a hard helmet!

I slept in today and felt quite a bit better; yesterday was about as bad as I want to get.

Memorial Day has me thinking about my uncle. EG in the title, of course, is for the Enola Gay he flew on.

On a different note.  The baby peregrines are supposed to fledge Friday or so. (I’m wondering about the one that is two days younger than the others.)  The falconatics have a listserv where they’ve been talking about breaking out the chocolate in celebration come the day, and one said, we’d have to open a whole chocolate shop!

To which I replied that it would need to be dark chocolate to celebrate Clara silhouetted against the city lights.  Only, make sure it’s not a fly-by-night operation.

I’ve gone from a calm yeah, yeah, whatever–hey, no blood through the stoma, which they were glad to hear, so how bad can it be, to wanting to type a screaming NO NO NO NO NO!!! to semi-calm again.  Yes, we did go to Urgent Care, the deciding factor being that there’s no question they would have access to my electronic medical records there; the peer pressure via the blog was very helpful in getting me out the door, and thank you.

I did not know there was such a thing as drinkable lidocaine with maalox. I told the doctor I preferred chocolate.  He chuckled.  He came back awhile later and asked if it helped; it did. I got the impression he almost hoped it didn’t, that he wanted to be wrong.  Looks like upper GI inflammation.  That area would be your stomach, and…  What do they treat your Crohn’s with?

…oh.

He allowed as how he could do a full workup with a CT scan, but it could wait till tomorrow with the GI doctors taking over. Oh, right, sorry, Tuesday.

We got home.  The phone rang. My friends Valerie and Al: his mother was visiting, they wanted to go to Santa Cruz but she wasn’t up to the walk, would it be possible to borrow my wheelchair?

Hey, not only a wheelchair.  When they got here, I apologized for the ratty-looking air cushion that we hadn’t replaced because of the unspeakable price tag, so please, no keys in the pockets, it’s punctureable.  But the chair alone would make her sore after a half hour or so, and with the cushion she’d feel wonderful however long they took and wherever they might go.

I took a risk and let my cushion I can’t afford to replace go to make an elderly woman I’d never met before today more comfortable in her day, and it totally made mine.

Of all the times she might have visited, of all the days they might have decided to drive over the hill to the beach at Santa Cruz, I needed it to be today, which they could never have known.  And so they did.  I can just hear the wheels going bumpitybumpitybumpity down the boardwalk from here.

(p.s. Today is my son Richard and his wife Kim’s first anniversary, and I can’t tell you how grateful and honored I feel to have Kim in the family. Happy anniversary!)

There was a new receptionist yesterday, she made a rookie mistake, and I didn’t correct for it.   I shouldn’t be making rookie mistakes myself by now, that was my fault.

In Family Practice, the receptionists have seemed to me to be empowered to simply create you a same-day appointment if the need is compelling. It wasn’t till after everything settled down yesterday and I’d had time to think that I realized that maybe that’s just through the one woman I know there who’s been on that job for all the 22 years we’ve lived here; she knows me and knows that my doctor and nurse in FP know me–that I don’t waste their time.  If I say I need to be seen, I do.

So when I called early yesterday morning to the GI department, I wondered if we might be able to do that, given how compelling the symptoms were to me: just give me an appointment, okay?

The result is that the new receptionist, who I’m sure could not in fact do that, made the mistake of sending a message to a nurse rather than connecting me to that nurse’s voicemail to do so myself. Which I should have insisted on, so that the nurse (who was also new and didn’t know me) would get a clear message of symptoms and would hear my voice in the process–that’s actually pretty important.

So some of the blame is absolutely mine in yesterday’s mess.

Last night was rough. Today not so much–but.  I sent a note off to my Dr. R in case he or whoever’s on call might be checking his messages, and something about spelling it all out like that… I think I may well let myself be talked into going to Urgent Care later after all.

Meantime, thank you, everybody, for your support. It helps.

I had a conversation once with my Dr R about another doctor whose nurse wasn’t returning my phone calls over a worrisome subject outside Dr. R’s field. “He doesn’t understand,” I said, “I don’t complain. And if I *do* complain, LISTEN UP!”

Dr R agreed, “You don’t complain,” and I knew what he was thinking: about the time six years ago when I kept thinking I was surely getting better till the morning it all suddenly went south fast and my survival was no sure thing. He made me promise forevermore after that to tell him when I wasn’t doing well.

I’m not doing well. I know, I was, it was nice while it lasted.

He’s on sabbatical. The receptionist said his nurse would ask the other doctors’ nurses if one of them could fit me in today. Five hours later, no phone call–when I called again and said, here, let me add some context to that, I had a total colectomy four months ago, I got a receptionist in what-can-I-do mode telling me she’d told the nurse and the nurse would call me back.

Yeah, I’ve been here before. When that one doctor did not answer me for four days I finally parked myself in his waiting room before he arrived for work that morning and demanded to be seen. It worked.

Abdominal pain as a description may not be a big deal to a gastroenterologist who doesn’t know me, but I know me and random doubling over when I eat or walk is Not A Good Sign. See me. Now.

—————-

Follow-up,  3:30: They blew me off. But at least I made them do so to my face rather than by their having me waiting by the phone for twelve hours.  They told me to go to Urgent Care.

It’s a holiday weekend and clearly none of them wanted to put in any extra time.

You go to Urgent Care to get an IV. You do not go there to get a diagnosis. I got sent there once under similar circumstances and got a doctor who denied I had Crohn’s, denied the reality of the Asacol I’d been on for five years for Crohn’s, insisted I must have eaten raspberries with salmonella, insisted he saw that a lot lately (and on how many others of them were you wrong, too, sir?), tested me, and it came back negative as I knew it would.  He insisted on re-testing me and culturing for ten days because by golly it was going to prove him right!

It stayed negative. Fancy that.

I figure today, well, if I’m healthy enough to manage driving myself there and back, then I guess I’ve validated their demand that I not get sick till Tuesday when the holiday weekend is over.

(Hey, wait, I guess I *can* take a picture at 9:35 pm! Flying totally blind, but hey, that’s what flashes are for. Does this count as kinnearing?)

Thank you Dr. R. for telling me if I went ahead and had that colectomy that up till then I’d been so afraid of, that after recovery, I would feel wonderful…

When we were at that hardware store Saturday, I also picked up a few chocolate mint plants.  When we got home, I planted them along a narrow strip at the front where they would be hemmed in by concrete: the walkway ahead of them, the foundation of the house behind, in a small bed less than a foot wide set between. Rinsed mint leaves dipped in sugar is a favorite of mine, and who can resist one that has chocolate as part of its very name? We would get along well.

Michelle asked me later, when she got home, “But Mom, don’t you know mint roots can grow through concrete?”  I knew they were invasive, but as in, right there right into the house?

Huh. Well, my mom says her Aunt Betty’s old house was held up by the ivy that grew clear into the closets on the second floor (wood is wood, right?), and I know that house has been standing since at least the late 1800’s.  Mint smells better than ivy.  Still.  Um.  I might have to eat a lot? We might replace zucchini in the proverbial scenario where the neighbors close the curtains and refuse to answer the door when they see us coming bringing some to share?

I planted two tomatoes out front: I thought that’s where Richard wanted them. He thought it was where I wanted them and that he was being agreeable. Turns out neither of us really wanted them there.  Again, that was Saturday evening; tonight in the dusk (after somewhat more careful consultation) they and the cages that were around them got slipped into the back yard and disappeared from the front.  You know, just messing with the neighbors’ minds a little. It was amazing to me to see how much growth they’d put out in two days of having extra dirt and sun to kick back in, basking in the warmth.

I was careful to take extra soil with the original rootballs.

Someone, I’m not sure who, topped the fig tree last fall.  Why? …Instead of soaring straight up, now it’s growing thickly in two parts from the cut at the top.  It’s right at the fence line.  I’m sitting here thinking at the folks behind us, half for you, half for me.  We’ll see how it goes. Again with the consultation concept: I’ll ask them if they want it there and if not, out it will go and a new one will be planted elsewhere. Having now owned a fig tree, I want a fig tree.

I watered the apple and plum trees, (the Meyer lemon can fend for itself for the moment) noting that despite the blossoms earlier, there was no sign of growing plumlets on the baby Santa Rosa and a few leaves looked well chewed. Okay, I guess not this year. Next year; all the more to look forward to (while I go read up on the subject to make sure it will happen then).

I tried to plant the hydrangea to top the evening off, but I ran out of daylight, since I can only garden outside when the UV risk is essentially zero–but the late evenings are definitely mine now.  Lift a spade full of rocks?  I can do this. For so very, very long, I could not, not the digging, not the lifting, not the carrying the hose from front to back, not the spading-out where I wanted those tomatoes, but now, I can.  All this energy!

At least today I knew where the spade was; those mint plants and the tomatoes in their first spot got planted with a large serving spoon from the kitchen.  Tells you how long it’s been.

In the “everything happens for a reason” department…

I wanted to get that birdfeeder set up that I got for Mother’s Day; we needed a large screw to put into the end of the porch overhang so that I could have it right outside my window here as I sit at the computer. Richard promises not to bump his head on it. And we needed a small metal trashcan to keep the seed in outside.

Every time we made plans to go to the hardware store this past week, which is not even a mile from our house, somehow it just didn’t happen. Till last night.

It was near to closing time and the store was pretty quiet.  We were going up and down the far aisles after we found the small trashcan: chewproof metal with a small hole already in the center of the lid so the seed can air out.  Item one done.

As we looked, there was a man with his own cart looking for something or other; we did the usual not-really-paying-attention-to-each-other as we passed.

I stopped.  Richard continued forward with our cart, but I backed up. I went over to the guy, and told him, “I like your T-shirt.” That stopped him as he did the sudden surprised reaction of thinking wait, which one am I wearing?  Oh, right.  Stanford Blood Center written across the front.

I told him, “Seven people donated blood in January and saved my life.”

He looked in my eyes in wonder and gratitude, then got a faraway look and his eyes got misty.  I added, “Thank you,” and turned at the end of the aisle and away.

I was actually on the verge of deleting the draft I was writing yesterday, thinking who wants to read this stuff, when that phone rang.  It was so stunning to me that that nurse would call immediately after I’d finished the last sentence and that she would initiate it when I thought that was something I had to do, and I hadn’t, that I had to add in her call and put that post out there.

The upshot is, she found an infectious diseases specialist covered by my insurance, a woman who happens to have a particular interest in prosthetics.  There you go. I got the necessary referral arranged and Monday in I go. Perfect.

The samples arrived from the manufacturer this morning.  Not even afternoon delivery–they paid the extra for FedEx morning arrival.  Go Hollister. Go stoma nurses at Stanford. Wow.

I am feeling considerably more cheerful today about the whole thing, as one might imagine.

I’ve definitely got some thank-you knitting to get done.

TMI from a tired blogger:

The good part, I suppose, of looking up staphylococcus aureus (yowsers!) is that I’ve become even more obsessive about washing my hands. Rubbing my sleepy eyes after reading that article landed hard in the Thou Shalt Nots.

I went back to dermatology yesterday.   Then called the stoma nurse today: leaking bags waking me up in the middle of the night four times in one week on top of that still-there-staph aureus infection is kinda getting old.   Not to mention expensive–if I use too many in a month, I get to pay for the extras at about $30 retail a shot.

The stoma nurse pulled strings and has a different type of skin barrier being overnighted to me now as samples (bless her!) to try that hopefully won’t give way, and said the weeping skin won’t heal if the adhesive is being pulled off too often–keep it to every other day, no more.

The dermatologist says the skin needs an antibiotic gel applied twice a day in order to heal.

Uh, guys…

Just as I finished typing the above, the phone rang. It was a nurse from my husband’s employer, wanting to see how I’d been doing since February and could she help with anything?

So she is now going to confer with an infectious diseases specialist to see if she can get me any more information.  While I’m sitting here marveling at the out-of-the-blueness and the timing of her call. Wow.

Meantime, some knitting is still actually going on over here, slowly but surely, on my new Grafton needles handmade in–I’ve come to really love the place–Vermont.

I spent today watching this little Picotee slowly open up.

Quite a few of my older amaryllis bulbs have been blooming with unusually short stems this year, including these two and the budding one lurking behind them.

They’re typically marketed as Christmas presents and bloom around the winter holidays on towering two- to three-foot stalks, their leaves lasting eight months or so.  Then you quit watering them, let them rest for one and a half to three months, start up again and wait for them to rebloom.  Rinse, rest, repeat.

I like to have some in full flower as far into the year as I can, so I stretch out the drying-out periods to stagger the timing; last year I had flowers all the way to the end of May.  Cool!

So. Around the middle of this past December, I did a mass watering of my several dozen older bulbs to get them started, knowing some would respond quickly, some slower.

But I was already three weeks into my Crohn’s flare, and as many know, it got bad fast after that. Carrying heavy pitchers of water around was something that got given up real fast. I worried about killing my bulbs off–one watering in the middle of five months?  But there was not a thing I could do about it.  And they just were not the first thing on anyone else’s mind during those days, as one might well imagine.

Mom eventually planted the ones Dad gave me for my birthday and took on the watering.

My older bulbs could have put all their energy into sheer survival mode, green only.  Some did. But some, with the beginnings of buds already formed inside the bulbs, were determined to bloom the moment it became possible, however  it could be done.

And those are the ones with the short stems now, giving it all they’ve got. A green hummingbird enjoyed them a few days ago.  And suddenly our roses are blooming en masse to celebrate spring too; I almost caught a honeybee in this picture.

Lene? The bulb you gave me a year ago started to send up its first two leaves right away, then they died off in the drought. I started watering it anyway when I could again.  It took it weeks to respond, long enough that I wasn’t sure why I was still trying, but now it’s got two unusually wide, healthy young leaves making up for lost time.

Amaryllises need four leaves producing food for the bulb for them to bloom the next year.

I can wait.

I’ve got all the time in the world now.

When my folks were raising us six kids, there was a day when Mom hauled my brother to the emergency room–Washington, DC is not a small town–and the receptionist looked up and smiled, “Oh hello, Mrs. Jeppson. What is it this time?”

I heard that story from Mom when I called her 26 years ago wailing, “Do kids survive childhood!” after my baby, my first, 13 months old and a determined climber, had ended up in the ER two Fridays in a row.

Mom laughed and reminded me of all the things I’d done that had helped lead up to that receptionist’s question.

But I dunno. When you call the hospital (this was today) and the person who answers recognizes your voice…

Two and a half months ago, after my surgery, they told me that some ileostomy patients eventually become allergic to the standard skin protectant they were using.  Hopefully I wouldn’t be one of them.

And I thought, my stars, have you ever met my feral immune system? It is NOT housebroken!

Two and a half months.  The fungal and yeast tests came back negative, the allergy patch flaming. That stoma paste is SO busted.  There’s an expensive alternative, and my insurance is just going to have to take it.  (I know,  I know, given January, we’ll all weep for them.)

You guys out there in the industry, creating Eakins and the like, you’d better keep researching and inventing fast, because at this rate I’m just plain hosed.

I think I’ll go wrap me up in a blanket for which I am exceedingly grateful to my friends and knit. Something complicated that will require a lot of focus.

Amanda, I totally guessed it: the nurse I expected picked out the scarf from the yarn you gifted me with in Vermont. The colors were just right.

I had an appointment at Stanford’s outpatient ostomy unit yesterday, and you know what I showed up with in my knitting bag, hoping again to get to see some more of my old nurses.  And I did.

The whole time I was knitting Amanda’s Huarache yarn I kept thinking how good it would look on A.  And now it does.  Cool.

Two other nurses chose their favorites, and the bright green still waits for P; they told me she’ll be in next week.

But what most delighted them was simply getting to see me walking in there and looking well.  It was fun watching the doubletakes, followed by the hugs in intense delight.  Seeing me well validates what their work is all about.  Seeing me coming back to show them I am well now validates who they personally are and how they go about their day as they do what they do.  They care. It shows.  In return, their patients really do care about them too.

So I’ve been picturing them wearing their scarves the rest of their shifts yesterday. Maybe someone asked them where those suddenly came from in the middle of the day. Maybe another patient decided that they might come back later to say thank you too, seeing how happy it was making their nurse.

Maybe. I don’t know. But, knitting as love made just a little more visible: I can hope.

(Taken through the skylight.)

I haven’t mentioned the outcome before over here, but back in September–you know, back when the economy seemed okay, back when we didn’t have thousands in medical bills and co-pays, etc–we decided to go for an old and very large dream of ours: we signed the papers. We were going solar.  Bigtime.  (Now if the car companies would only fall in line so we can charge a car from the house.  Can’t afford a Tesla…)

And then we had to wait for our panels to be manufactured.  Others who had tax breaks elsewhere with a January 1 deadline got theirs ahead of us, and we were okay with that.  But finally we got word that our panels were ready to be delivered and installed.

…The week I got home after nearly three weeks in the hospital with my total-colectomy surgery.  With all those skylights, dead center in one bathroom and above the sink of the other (but with a strategic door at least). Oh joy. Hi guys.

The owner of the company, who knew, told each of his workers they had to knock on the door and ask permission each day before doing anything or making any noise up there, that they were not to interfere in my recovering.  I was quite surprised.  And each day, they got told thank you for asking, and hey, go right ahead.  Work progressed nicely.  (I wanted it OVER with!)

It was worth every moment.

My cousin Dan and his family who came over last night–turns out they got the same panels a year ahead of ours.   Cool.

Now, this being California in a drought, if only we could do the same produce-your-own with water.  Suppose we could build a pipeline and help out those folks in Fargo?

I tried to run after our longtime mailman Monday afternoon and was surprised to find my legs not quite moving as fast as I was telling them to–I nearly splatted forward on my face.  Oh.  So I called after the guy as he was walking away, he stopped, put my bill payment in his pack with a smile, sure, lady, no problem.

I went back inside marveling at the disconnect between brain and attempted movement–and marveling too at the fact that I simply hadn’t noticed that I wasn’t doing that anymore when I walk.  For a month, I’d had to be mindful of my steps to make sure my legs kept up the pace or my expectations slowed down to match them.  How soon we forget, the instant things seem to be normal again.

Today.  Out of milk and orange juice, we decided we needed a quick trip to the nearby Costco.

To Mom and Richard’s surprise, I offered to tag along. And I went.

The Trader Joe’s store where I found myself abruptly giving out last week, where Sam made me go sit down fast, is a small store.  Costco, on the other hand, is huge.  We walked aisle after aisle–I hadn’t been able to go in nearly four months.  It was like a novelty.  An adventure.  Plus I was having to look at the foods on display with new eyes: oh, that’s good stuff, oh wait, I can’t eat that.  That? No. Not that. That. Another week left on the post-surgical modified diet; having had one blockage and NG tube, I’m being real careful to avoid a repeat.

I did it.  I walked Costco.  I did it!

Next time, by golly, I might even try to run down one back aisle when nobody’s looking.