Not for my grandkids to walk through you don’t. Out!
Tuesday March 01st 2016, 10:18 pm
Filed under: Crohn's flare,Family,Garden,Life

Rain is coming, nine days of it, after a mostly-dry February. Hallelujah.

Which also means that since I was feeling a lot better and the time was very short, I spent about two hours yesterday yanking out hundreds of weeds by the roots before that water lets them re-anchor. Before, the plants weren’t big enough to reliably pull clear to the taproot, the leaves would just tear off. I’d tried.

Okay, the answer to that is to use a trowel but that’s harder on my knitting hands.

I got the huge yard-trimmings bin half full and snapped this photo before calling it a night. I’d made decent progress, at least.

And then I spent today feverish and achy and mostly asleep and I just barely managed to get fluids down–the Crohn’s wanted in on the fun. Speaking of which, if the MAP vaccine currently in trial succeeds I am going to be first in line the first day and it would be SO cool to have a cure!

Anyway, re the germ relapse, I totally earned it but I’m still glad I got those weeds out. Some had already started to grow their stabby Hades heels.



Thank you Mosaic Moon
Monday February 22nd 2016, 11:36 pm
Filed under: Crohn's flare,Food,Garden,LYS

One other Stitches story: I looked down at the basket at the front of my scooter Saturday afternoon and was stunned to find a four-inch knitted square in soft purple merino finished with a little crocheted hanging loop. Oh goodness!

I wheeled straight back to Mosaic Moon with the deepest apologies for my inadvertent thievery, saying it had to have either been from them or one other booth. (I hoped?!)

The guy laughed off my worries, affirmed it was theirs, and was just plain glad to see me again because that’s the kind of person he is. I was impressed. And deeply relieved it had found its way home and no harm was done. He definitely deserved a shout-out, and Mosaic Moon’s yarns are gorgeous and soft and I spent a lot of time oohing and aahing in their booth.

Back home, the third and fourth peach trees are almost in sync: the Babcock started blooming last Thursday, while the Indian Free, my only one that needs a pollinator, is almost, almost blooming but just not quite there yet. Tomorrow. My Baby Crawford that I planted last month, once it grows up a little, should cover any time the Babcock’s not doing the necessary overlapping flowering while keeping up the steady sequence of ripening times. We do love a good peach.

Meantime, back when I pruned the vigorous Indian Free, I plunked the largest multi-branch in sugar water and left it in the kitchen a few weeks to see if it would do anything.

It sprouted thread-thin roots and I planted it in a pot as soon as I saw them, wondering if they would take and if so how to make the leaf/root balance play out right.

A few weeks later squirrelocity today could not make it uproot from that pot. Looking good.

And today for the first time it had a spark of green at one node and it made me just about giddy with glee: it lives! It really lives!

We don’t need two identicals. I’ve been thinking once it gets going it just couldn’t be that hard to find someone who wants glorious spring flowers and nice-sized leaves, a tree that is highly resistant to peach leaf curl, and if there’s a pollinator nearby all the better and they’ll have Thomas Jefferson’s favorite peaches but it would be worth having even without that. It’s a pretty tree. Without a grafted root stock I can only guess that it will want to be quite tall: future yarn bombers take note.

Let’s wait till we see a second leaf or three, though, m’kay? But still. Looking at it feels glorious. To life!



Starting yesterday
Wednesday December 30th 2015, 11:50 pm
Filed under: Crohn's flare,Family,Life

Beaver’s Disease–what the Alaskans call it (I learned something new this week.)

Giardia–what my microbiologist daughter calls it.

And in a moment of supreme irony, since none of us saw this coming when we were talking about it…

A possibility–what the doctor called it today (“Have you been up in the mountains?” Yes) as she wrote out the lab order.



Out on a limb
Sunday August 23rd 2015, 10:08 pm
Filed under: Crohn's flare,Life,Wildlife

It was a three steps back kind of day. A little discouraging, and the fever had begun to come in cabin flavor too.

And yet, when I had to crash and go lie down again, look who fluttered in. Same as yesterday: a dove in the camphor tree outside the clerestory window, keeping watch over her little flock by day. I watched her consider a few spots, then walk over to where there’s this little horizontal leg in the limb where it was just right. She turned around and around there, checking out all angles, just making sure of her safety, then back to facing me.

It was a good spot. She stood there a moment, then quietly settled down on her feet. She let her wings relax to brush the limb and then she simply shared the day with me for a good long time, however long I might need her, it felt like: she had all the time in the world.

When my first attempt at a picture was a complete whiteout she even let me walk closer for a better one, although she did lift her wings a bit.

Then she let it be.

It was strange and normal and lovely all at once, and I am grateful.



The interweb
Saturday August 22nd 2015, 9:56 pm
Filed under: Crohn's flare,Life,Wildlife

I knew that some birds collect spiderwebs for the cushioning and great tensile strength those give their nestbuilding.

I knew that many songbirds with a failing nest, i.e. where none of their young in the spring survive, will mate again and raise a second set of young in the summer. And so starting last week I started noticing the occasional finch here and there acting as if it hadn’t quite nailed this landing thing yet–and I’ve been watching one yesterday and today doing feed-me begging that females do when choosing a mate and new fledglings till their parents start turning away from them. I’m assuming, given the date, it was a fledgling bugging her dad.

What I hadn’t quite put together was that the number of spiderwebs on my floor-to-ceiling glass on one and a half sides of this room just explodes in tandem with when those birds need that resource: in the early spring, the sides of the windows are always suddenly quite covered and everyone from Bewick’s wrens to chickadees to finches want a piece of it. Then when nesting seemed to have settled in in earnest this year (instead of two flirting Bewick’s wrens there was only ever one seen at a time, the other clearly minding the eggs) I cleaned the windows. Just like I do every year, only for the first time I was paying attention to the timing of all this.

They stayed clean.

And then suddenly all at once about a month ago the view out was looking like it was dressed for Halloween again. I resisted the strong temptation to clear it out immediately.

There are not as many young as in the spring, but they’re there. The scrub jay knows it, too–he’s suddenly testing to see if I’m still on his case, trying again to scare them into a collision for an easy meal and has to be reminded he’s no longer welcome here now that he’s learned to mimic the hawk’s hunting.

A bird in the squeezing talons of the Cooper’s hawk simply stops breathing. With a crow-beaked scrub jay? Brutal, inept, stumbling stabbing for as long as it takes as the smaller bird struggles and suffers. The hawk has no other menu. The jay certainly does.

But it speaks the language of territory and this territory is mine and it sees me. OUT. I open the door and it doesn’t even try for the fence line, it’s over it and away. This week, though, with me spending a lot of time sick in bed, I’ve simply let the feeder go empty several times and let the flocks disperse. Easiest way to manage it.

I filled the feeder today and was up to watching the birds awhile.

It’s about time to start cleaning those leftover cobwebs. They’ve served their purpose. Give me a few more days.



Um, moving right along…
Thursday August 20th 2015, 9:07 pm
Filed under: Crohn's flare,Family,Life

Richard remembered the Zofran (an anti-nausea med) prescribed the last time we went through this and I managed to get it down and avoid the whole IV fluids thing. The fever has settled down too. Yay.

DebbieR’s comment about her finger puppets at work was the perfect comic relief, and thank you. Richard found himself remembering back to the time years ago when he was in a meeting at work and someone was having quite the meltdown over something of no consequence: and so without even thinking, parental instincts and all that, he reached into his pocket for one of the baby’s pacifiers and flipped it over to the guy.

Um. Oops. Sorry…

(I just asked him, who was that guy? He told me. Ooooh, yeah, okay…)



A little bit of sunshine
Sunday June 07th 2015, 11:10 pm
Filed under: Crohn's flare,Family,Garden,Recipes

The day did not start off at its best and I admitted to a friend at church that the Crohn’s had been nagging at the edges since I’d come down with those germs. It had tamped down a lot but it wasn’t gone–I needed to finally make that doctor appointment. Part of it too was that it is June, and there is always more UV exposure this time of year.

Having said all that out loud, I almost sat down to knit after lunch but decided to be sensible and rest. I set an alarm and slept right through it. It did help. As does the happy anticipation of working with Karin’s yarn.

There was a wry moment of checking the UV rating and dinner time vs when it would be safe to walk outside to harvest. I threw on the sun jacket. Picking well after dinner and putting it in the fridge for the next day–no. My autoimmunity doesn’t get to make every decision. (I know…)

One fit-between-your-outstretched-thumb-and-fingertips round zucchini, halved, scooped out, nuked just a bit, filled with Alfredo sauce, bacon bits, and a good sharp cheddar and then baked for a half hour. Snap peas (I thought I picked–there are more? Yes!) in olive oil.

It still amazes me, this idea of trading seeds and water (not too much!) for real-life food. My spinach sprouted today–there will be more.

The peaches and apples are slowly, steadily growing, safe inside their clamshells. I picked a few raspberries and the first of the Top Hat blueberries and we shared a small handful each, red and blue warm from the last of the sun on a definitely-summer evening.

And they were very, very good.



The talk
Sunday May 31st 2015, 9:49 pm
Filed under: Crohn's flare,Family,Friends,Life,Lupus

You know how here in the drought we’re supposed to catch the water in a big dyepot while we’re waiting for the shower to warm up?

When you’re in a rush to get ready for church and you’re trying to feel prepared to give a talk, certain people might find it counterproductive to drop their good size 13 black shoe in that pot that got set not quite far enough aside afterwards. Just saying.

A trying-not-to-be-growly, “Dear, would you help me with this hair dryer?”

I laughed, I mean, what can you do, it was just so unexpected. “I was going to dry my hair.” (We got both done, pretty much.)

As we were pulling into the parking lot, Richard happened to say that the best talks he’d ever given were the ones where he’d prepared it and then had just winged it with what it felt like he should say.

Because I was saying I’d written a good talk but it just wasn’t quite…something. It was a perfectly good talk and I didn’t want to admit to myself after all that work and this close to standing up that it felt like I might be disappointed if that’s all I gave.

And in the moment of truth when I was at that podium I did what he’d done and was glad for that conversation. I said I’d prepared what I’d thought I was going to say–and I was chucking it. I set my sheets of paper to the side there.

And then I spoke straight from the heart. I knew a few people there had already heard bits and pieces of this and that but here was the whole of it in one piece.

I mentioned a woman I’d never seen before who was clearly badly struggling with–something that day, and I took a leap and said what turned out to be just the right thing for her.

Someone had seen. And in that moment we were strangers no more and I saw the burden visibly lift from her. I knew no details, just that she had found what she’d needed in that moment. We have to be willing to be present for each other and the smallest interactions matter so much.

I talked of my faults. I said, I was asked to speak on reverence within this Sacrament meeting and yet I’m the disruptive one, I’m the one who gets up and moves away if someone sits down coughing near me. I talked about why. I said, But there is no place for me being grumpy or growly when someone does. None. And I have been, and I apologize for that. We all come here to find peace, not just me.

(It was a no-names public apology to the old woman who’d come in late and coughed on me (again) after having previously given me bronchitis doing so. She’d had no way to truly know what it was like and she had never deserved my grousing–there are better ways to handle things and as you my own blog readers pointed out to me at the time and I thank you for that, she had just as much a right to sit where she wanted to as I did.)

We are here to serve God by loving one another. That only is what we should bring here (or anywhere else). Full stop.

I talked about the first, and then the second big Crohn’s flare, where my immediate reaction to it was, but, but, I don’t need another experience like this to teach me to be a nice person–I think I did a pretty good job of learning a lot the last time around. Do I have to go through this? I don’t want to!

So I prayed.

And the answer to my prayer was this:

All I had was who I was.

Okay. I decided to pray for each person who entered my hospital room after that. I wanted them to feel their work had meaning and they were valued for who they were as well as for what they did. I figured if I could drop that pebble in their ponds the ripples would go outward to countless patients after me, remembering Dr. Rachel Remen’s books in which she said there’s a certain kind of immortality in acts of kindness.

I said to the ward, You can’t pray, really pray for someone without coming to love them.

And thus one Stanford doctor came to confess one day that he’d written in my chart, Patient looks deceptively well. Do not be deceived.

Because you aren’t supposed to be that cheerful when you’re that sick.

I ran into that doctor a few months after I got out of that hospital and I called out his name. He had no idea–and then—-!!! He was ecstatic! “LOOK at you!!! You look GREAT!!!”

Love strengthened life and I was still here.

He had wondered. And now he knew.

And he knew his own caring had made a difference.



Got that out of the way
Wednesday April 15th 2015, 10:13 pm
Filed under: Crohn's flare,Life,Lupus

Me: The scan was fine so I can cancel that appointment, right? (I feel fine. I don’t want to be a patient. I’ve been a patient a lot. Now it’s my turn to just plain be an ordinary person while I can for as long as I can and I’m pretending I never have to do the patient thing again and just let me enjoy my break while I have it, willya.)

The nurse: Um, no, you better go.

The specialist: The scan was not quite so perfectly fine.

And that is how I ended up having a procedure done today that was an inpatient one done under anesthesia back in my mom’s day. I did not know this doctor, but he struck me as being terribly weary of inflicting pain on the innocent. But the thing is what it is. I had no idea what other burdens he might be bearing; my heart went out to him. I wanted badly to comfort him, to tell him it’s his job to do his best to keep us healthy and it’s our job to be grateful for his efforts and skills and caring. It wouldn’t bother him if he didn’t care, it’s a sign he’s a good person. As for my end of things, it would be just one day–or the start of knowing what to cope with, and knowledge itself is power over illness, along with all the love in the world.

I at last got him to laugh when I told him I was going to call my daughter and tell her what I did to celebrate her birthday. He did seem better after that.

And the verdict is (roll the drums, blast the trumpets): no bladder cancer. The Remicade and Humira side-effects haven’t gotten to me yet. And I say (waving my magic wand, making it so) they never will. So there.

And the knitter in me wonders if I should knit him a hat. A warm and soft one.



Fixed in our ways
Sunday February 22nd 2015, 10:11 pm
Filed under: Crohn's flare,Family,Friends,Life,Lupus

Let me say upfront that it’s nearly impossible to rile my husband. He’s calm, steady, seeks for understanding, he’s my rock. So I can’t imagine that he was anything but matter-of-fact in his statement. Me, on the other hand, I think I struggle a little harder at staying charitable when someone hits me right where I live. Literally. Even if we tell them they don’t know, they can’t possibly know, we remind ourselves, only those who live it can.

Although, the doctors and nurses at Stanford Hospital certainly do a good job of it. Good people. Yeah… That, “Oh I remember you!”

Our ward shares its church building with another ward and at the beginning of every year we flip which one has mornings and which the afternoons, whose toddlers get their nap time, who gets to sleep in.

There is an elderly woman in the other ward who–and this is the first year she’s done this–has decided she didn’t want to make that switch so she would just join ours. She probably has her favorite seat that her ward knows all about and she always goes there unless someone beats her to it, and that’s fine. We do too, going for where I’m most likely to hear, assuming no one else is there yet.

Two weeks ago she sat down right behind us (we always get there a little early, she, a little late) and started coughing hard. I apologized but got up and moved as far away as I reasonably could without making a scene (scoot down that bench…) Our ward knows. She had no idea, so we explained after the meeting was over and hoped that was that.

Last week someone beat her there–he was from out of town, visiting his grandkids. Directly behind us, clearly sick, coughing deeply. Given how fast and how hard that same cough would hit me a few days later, I can understand why getting ready for church he’d probably thought it wasn’t much. And I can certainly understand wanting to spend every minute with your grandkids you can (this being why I’ve been wearing face masks to church since Madison was born–I don’t want to be limited in when we can go see ours. But last week I forgot to bring one and there you go.)

The brainstem lupus had me fainting in the shower this morning, saved by the shower chair a dear friend dropped off last night when she heard. The tyranny of the ileostomy is that it does not care that you’re too sick to deal with changing the dressing every third day, you absolutely must and you must do every step right because one four-month staph infection is enough.

Hopefully all of this will be very short-term. I prefer my Crohn’s flares being in the past tense–and for the most part, they are, this is nothing compared to those two big ones: when my life was saved by an experimental med, when my life was saved by major surgery.

Michelle’s idea is that we should ask permission to place a box of face masks at the entryway for all who might need one to help themselves to. I think I should have one and a spare in my purse as it is.

Richard went off to church this morning. That same elderly lady sat down behind him after he got there.

And again she was coughing. A lot. While asking after me.

A short and sweet, “My wife is very ill. Someone was coughing right behind her last week.”

We bought plane tickets before all this started to go see our grandkids and to celebrate a birthday. Assuming we’re healthy.

—–

P.S. Rereading this I’m thinking, can you tell I’m ready to be done with this? And remembering the nurse I once apologized to at Stanford who comforted me with, and I’ll never forget the kindness of her words, “It’s okay to be grumpy: when our patients feel well enough to be grumpy it means they’re getting better and they want to go home.”



A day at a time
Saturday February 21st 2015, 12:02 am
Filed under: Crohn's flare,Family,Life

Last night Richard took care of the mango tree for me.

Tonight I turned the warming lights on and covered it over myself, claiming a little bit of normal life even though I’m far from feeling it–but it’s proof that today was better than yesterday. By far.

Still needing anti-nausea meds, though–the Crohn’s has been announcing itself along with the flu. Hopefully it will all settle down when the germs are over.



Stanford earns top billing
Wednesday December 10th 2014, 11:30 pm
Filed under: Crohn's flare,Life,Lupus,Politics

Got some bad guys and some good guys for you today.

Back in September, when I caught the flu with all the autoimmune flaring that went with, I was barfing nonstop from the Crohn’s. The lupus was going nuts, too, my blood pressure was tanking, and I needed IV fluids, fast, just to start. (There would be chest and abdominal x-rays too.)

There were a lot of other people around with early-season flu, too, but for whatever the reason, when we called my doctor her nurse emphatically told my husband not to take me to Urgent Care but rather straight to the ER.

This was not a decision made by us. She insisted. She said if we went to Urgent Care they would simply send us over to Stanford, and we knew what the co-pays on the ambulance they would insist on would be, not to mention it would tie up that ambulance unnecessarily.

Turns out Anthem Blue Cross requires in their fine print that you verify with each health care provider before seeing them each time that they are still in contract with Anthem. Doesn’t matter if they were in-network for all the years you’ve had a policy with them, they reserved the right to yank that at any time. Doesn’t matter if you’re in an emergency with no capability of sitting on hold on the phone for two hours. Etc.

Now, by the contract we’d signed at open enrollment, if you go out-of-network in an emergency they’re still supposed to pay such a percentage and even though it’s less, it’s still a substantial amount.

Anthem and Stanford were in a contract dispute. Anthem never notified us in any way, not so much as an email, nor by their terms do they have to, and our trip to that ER was a life-and-death emergency with my already-very-low blood pressure. As far as I’ve been able to tell since, that day we had and we still have no in-contract hospital to divert to, either; I could be wrong on that but Anthem certainly hasn’t offered us any information to the contrary.

So we are paying for insurance to cover things they will not cover despite selling us a policy on the grounds that they would. I’d call that fraud, myself.

So, out of network, painful, but I thought we’d be out about a grand. Someone on the phone at one point said three. Ouch. But we waited for a bill. And waited. And waited, while the two sides hashed it out.

We got a notice finally last week from Anthem, and a day or two later a letter from Stanford.

And this is what Anthem said:

Not.

Covered.

Except this one unclear thing here that was probably that IV and only that IV, or maybe one individual doctor they were not in dispute with. But whatever, so, one thousand paid towards the claim and that was all it was going to be. “Your responsibility”:

Twelve thousand nine hundred ninety-nine dollars.

Breathe.

Hello? Out of network percentages, at least? How can they…?!

They don’t care.

Then came a letter from Stanford Hospital.

And they said, It is not your fault that we and Anthem Blue Cross are currently out of contract, and your health is more important. We don’t want you to be afraid to get medical care when you need it.

They said they will only charge us what our co-pays would have been had everything been as we expected when we went in there, as if all prior contracts had been in full force.

Multiply that times the whatever number of patients, given that Anthem covers something like a third of all the people in California, and what their bills could be and that Anthem should legitimately be covering and refuses to… Staggering. Just staggering.

I just felt (and these words look so faint on the page compared to how I feel) that Stanford deserves my praise and my thanks as loudly and as publicly as I can offer them.



And don’t forget the triple-ginger snaps
Monday October 13th 2014, 9:32 pm
Filed under: Crohn's flare,Family,Life,Lupus

My doctor told me to get my flu shot as soon as I, in her words, wasn’t very sick.

And so Richard was going to leave work early and get me to the clinic before their flu-shot nurse called it a day at 5:00. I just wasn’t up to running lots of errands on my own yet.

The lights were not with us. We got there 5:02, no dice. Oh well.

It was a moment of truth: I just really, really didn’t want to have to worry about going through the last two weeks all over again if I could do anything about it–I wanted that shot done with. (He’d already gotten his.) And so we drove across town to Costco.

Pro tip: that was the fewest people I have seen in that store in ages, 5:25 must be the right time to go.

Not to mention the fewest infectious agents around us and for me to be around them.

There were questions to check off: are you currently sick? I simply left that one blank and they did not call me on it. Do you have any immune disease such as AIDS or cancer? Uh, yes no no–so, yes.

They made me wait 15 minutes while they shuffled paperwork. I had not brought my knitting, deliberately: my hands needed a break after major baby blanket time, but I’d forgotten my book, too. It is a sign of how quickly I’d run out of steam that I forgot that I could simply read the news on my phone.

I sat on their bench that faced a towering display of Men’s L/XL incontinence help (charming), noting the heavy towers of pallets to right and left, the emergency exit door thataway, and plotting my duck-and-cover should the quake strike. I’ve been under swinging chandeliers before, but at least they were anchored to the ceiling. Get away from those aisles. (The bored mind in earthquake country.)

And then they called me into a back room and the deed was done. I cannot begin to tell you what a relief it is that that is so. I have my flu shot. The world is a slightly safer place.



Tomato escape
Tuesday October 07th 2014, 9:17 pm
Filed under: Crohn's flare,Garden,Life

Last night was the first night I slept since this started, just a few coughing spells. Today was the first day I was able to eat without having to use anti-nausea meds to make it possible. That’s real progress.

And I wound up the next ball of purple yarn for my project. I almost did it last night but thought, do you want to blow all your energy standing winding for twenty minutes and then be worse tomorrow because you’re already that tired, or do you want to wait till it’s easier so it gets done *and* you still feel well? I waited and today it was no problem. Wow what a difference.

Getting tomatoes out of those boxy cages is a real pain–and the guy who comes twice a month to do some of the outside yardwork that I can’t saw me coughing just before I headed back to bed to read awhile, not talking to him because I didn’t want to share the germs. Richard was working from home: another sign I was sick. The guy saw that things hadn’t been weeded for at least a week and there were now tomato branches growing through and blooming well outside the bird netting.

He got that one ripe heirloom tomato out of there for me and put it where we couldn’t miss seeing it the next time we looked out the window. Nobody had asked him to. He just did it. I got up soon after he and his partner working next door left, too late to say thank you or even to be sure which one of them had done it.

Looking forward to tomorrow. I like this getting-better stuff.



Sunday
Sunday October 05th 2014, 9:18 pm
Filed under: Crohn's flare,Friends,Knit

I snoozed through most of the first session. I tried.

I was feeling much better during the afternoon one and knitted through most of it–except for a few minutes there when the phone rang, checking first, and then the doorbell did. Glenn!

He was here for a business conference. He moved to New York City a few years ago and he wanted to stop by and say hi while he could. I waved through the window while Richard went outside to chat and to meet Glenn’s girlfriend; there was no way I was going to expose them to my germs. Sometimes it’s just not the day.

But at the end we did open the door between us, and standing well away from each other exchanged at least some actual greetings before they left.

And I…have run out of purple Malabrigo that’s wound up. I need to get up the oomph to wind the next ball tomorrow; today there was just no way.

Tomorrow I need to make the call to my GI doctor like the ER doctor had wanted me to do. This morning was worse, not better, and she made it clear that, even if I didn’t want to hear it, she thought the Crohn’s symptoms were actually caused by, y’know, my having Crohn’s. Flu does that.

Or maybe it will all clear up together. I’m hoping.