Angel food cake-powered
Sunday August 09th 2009, 2:21 pm
Filed under: Crohn's flare,Knitting a Gift,Life

I love Romi’s *roving badge touring Sock Summit!  So much for Monty Python: “Badges? Badges! We don’t need no stinkin’ badges!” Yes, we do.  What a cool idea.

I tried to catch up on my email yesterday and found it too big a job, but I want you all to know how much I appreciate every note and every comment. I didn’t say things too well on the blog, though: they took me off the IV painkiller, but oh goodness, I am definitely still on vicodin.

The roommate I’ve had all along got discharged this morning and came over to say goodbye before she left. She couldn’t quite stand up straight yet, she said.  She was wearing bluejeans and I winced for her and silently wished she had a jumper to go home in too.  But I realized afterwards that I’d let that distract me and I’d missed my chance to tell her something far more important: that when her husband and family had come in every evening, the joy and the love that radiated through the curtain was just wonderful to hear and a real blessing to me that I’d needed.  I’m too deaf to have overheard any conversations, but the part that mattered, that came through loud and clear.  The caring. The joy.

My abysmally low blood pressure was getting in the way of my healing–there’s a risk of pneumonia if you don’t get moving post-op, and I did just enough coughing to realize I surely didn’t want to go there.  But at the same time, they didn’t want me walking if I couldn’t get that top number to 80.  One of the surgeons on duty decided last night to try infusing me with albumen to see if that would help.

Boy did it.  I was walking for ten minutes soon after, with the very last of the IV bottle bubbling up–Richard said it looked like angel food cake batter being worked up. So now I can say I’ve mainlined angel food cake (still waiting to be able to claim that on chocolate.)  Pass the whipped cream.

I asked the nurse where the albumen comes from; she didn’t know. Richard promptly googled from the laptop and answered, Cows.

Cows?

Cows.

So does this mean someone who’s allergic to eggs could still have angel food cake? (Notice the one-track mind.) Freeze some crushed Heath bars to sprinkle in that whipped cream, okay?

Meantime, nobody’s been able to find that ziploc stuffed with scarves since I arrived. I’m sure I’ll find them immediately once I’m the one looking. But I managed to sit up long enough to finish a nearly-done one this morning, and the nurse I’ve had for the last few days was not comprehending as I explained how to rinse and lay it out to dry for the lacework to stand out and the thing to lengthen. It matched her shirt pretty well.  It was fun watching her face light up when she realized I really meant this thing she’d seen me working on was for her. Elann Baby Silk yarn, baby alpaca/silk.

Seeing someone’s face light up at being knit for.  Reclaiming Real Life in that moment.  Getting better is a cakewalk now.

*Roving is the word for fiber that has been washed, carded, and is ready to spin. I just needed to let Don in on the pun here.



Sock it to me
Saturday August 08th 2009, 11:17 am
Filed under: Crohn's flare

During my pre-op appointment, I ratted myself out to the surgical team and told them about my oxygen levels setting off the alarm at 78 and 80% post-op last time, warning them that whatever amount of morphine the self-administering pump had been set for, it was too high, even though I knew how much I was going to want that med.

That was one of my biggest issues going in.  Untreatable pain. What I didn’t expect was, they took that into account, took me seriously, and put me on a slightly different painkiller, and, they put me on oxygen so it wouldn’t be an issue. I don’t love plastic up my nose, but for that, it’s definitely okay with me.

I’m off both now. I’m far from fine but still, I keep telling myself this is easier than last time.

The surgeon’s first words out of his mouth on Wednesday when he saw me were, So. You decided not to go to your knitting conference?

As if!  I wish. I’d have been there! But it showed he cared what was important to me.

You up in Portland, is it wonderful there or what?



Day 3
Friday August 07th 2009, 7:55 pm
Filed under: Crohn's flare

They tried to get me to walk today. but at 78/35 bp when I stood up… A little later we got it to 83/39 and I did actually make it across the room and back.

That phlebotomist hasn’t come back in here. They did hear me on that one.

I wanted to knit today, always a good sign. One problem: the resident who put in my IV (always have a nurse do the needles…) put it in the crook of my arm. Every time I bend my arm I set off the alarm, but hey, I can hear it now.

Somehow my bag of scarves didn’t make it in here as far as Michelle could tell. I haven’t made it to that side of the room yet to see for myself, but she looked pretty carefully.



day 2
Thursday August 06th 2009, 4:25 pm
Filed under: Crohn's flare,Life

Coming into recovery was scary–I couldnt hear. With my hearing aids. Nobody knows why.  It’s gradually coming back and is better mostly.

the phlebotomist filled a glove with warm water to raise a vein–and dropped it casually on my belly. The small scream she got still didnt clue her in much–she then leaned it against my belly.

ive made a point of saying shes not to work on me again. she wasnt mean, just in way too much of a hurry.

Im trying to be a nice patient but Im not doing a great job yet.



Status
Wednesday August 05th 2009, 9:34 pm
Filed under: Crohn's flare,Family,Friends,Life,Non-Knitting

Alison is too out of it to post tonight. As one of the children said, “Another part bit the dust” I just left her side and she is pretty beat up. Believe it or not but she is frowning while she drifting in and out of it. The anesthesia knocked out her already bad hearing, but that seems to be improving slowly. They are trying to get her pain under control. She does not remember much of the day. They were happy with how it went. Maybe in a few days she will be, but not right now. Don’t expect much for a few days as she needs to recover. I will show her comments tomorrow if she is up to it.



Getting closer
Monday August 03rd 2009, 8:24 pm
Filed under: "Wrapped in Comfort",Crohn's flare,Knit

(Elann.com Baby Silk, two skeins to finish, 5mm needles, Michelle shawl lace pattern, four repeats plus edging, not yet finished/not blocked. Another nurse scarf-to-be.)

Saturday, it did not look good, I admitted during my appointment today, giving the dermatologist details.

That concerned him.

But then, as he got a look at the site of the staph infection, it turned out it had gotten much better under there in the interim and I exclaimed my relief as he peeled back part of the bag. He looked in my eyes, knowing what I needed to know, and told me, his voice sharing his own relief, “I see nothing now that would give a surgeon pause before going ahead.”

Thank goodness.

A very small part of my brain that I’ve been squelching hard wants to pipe up with, No? Are you sure?  Could you, like, maybe, look harder?



Right on
Thursday July 30th 2009, 6:00 pm
Filed under: Crohn's flare,Knit

A quick knitting note: I worked out a pattern and started a shawl a few days ago in a 65/35 cashmere/superfine merino blend…and then had the same hesitation I’ve always had in the half dozen years I’ve owned that yarn.

It is lovely, lovely, soft stuff. But…  I finally handed Michelle two strands of it and asked her to pull them apart.  Zero effort–foof, done.

I asked her advice, and her reaction was she would never wear something where she would be afraid a wedding ring would catch on it the first time she wore it and then that would be the end of all that work.

I took the needles out, sealed it back in its bag, and put it back in its corner. Maybe someday I’ll ply it with something stronger.  To be sure, then, I tug-tested my Fino baby alpaca/silk I’d bought at Purlescence.  No breaking. Guess which one I’m knitting?

A bit of medical stuff:

After all the grief in January, I must give them credit.

Caremark sent me a letter recently, as I’ve mentioned, and then a second to reiterate the point, denying me not only my anti-nausea med because I didn’t have one of two specific types of cancer, but denying my doctor the right to prescribe an IV dose of it above a certain level.

This is stupid. This is a med that can help keep me out of the hospital, given my low blood pressure’s inability to tolerate barfing.

They told me I could appeal.

It took me awhile to do. A friend showed me a sample letter for a formal, matter-of-fact medical appeal to follow.

I couldn’t write it. I tried. I just couldn’t.

I finally sat down about a week ago and wrote the letter *I* needed to write, spelling out exactly what they had done in January and why their stance was again medically unreasonable.  That I might have been able to keep my colon had they responded in a timely manner earlier.  Telling them in no uncertain terms what I expected them to do and to do it right.  NOW. I snailmailed it to them and a copy to Blue Cross. A lawyer was mentioned as a possibility.

I got a call today from a nurse working for Blue Cross. She made no direct mention of that letter.  But she was appalled when she heard the details from back then and told me exactly what she was going to do to follow up on that. Meantime, she gave me her name, her phone number, her fax number, her colleague’s name as a backup, and told me if I had any problem authorizing anything, contact her immediately, and if I had a problem at an after-hours time, call this other number.  She told me Caremark had no business whatsoever with in-hospital dosages, not even at Urgent Care, they only had any possible say in home health care after the hospitalization.  Any problem, call her. And fax this form from their site so that Richard could call on my behalf if need be.

I was gobsmacked. They actually did the right thing. Someone at my insurance is actually on my side now.  Wow. Cool.



Skirting the issue
Wednesday July 29th 2009, 7:42 pm
Filed under: Crohn's flare,Life

Ah, my, trying to figure out a way to write about this one in a way my mother won’t object to…

Okay, first: in answer to the question about whether I named the toy white cell Sam sent me? Leuk, of course, short for leukocyte.  Leuk! Leuk! Use the Farce!

Ahem. Next: I have a few skirts made from a microfiber polyester suede-look fabric. I love natural fibers, but these have earned their keep. They’re pretty imperturbable, indestructible, and in my experience, given that they don’t absorb stuff, they are definitely un-stainable. (They also seem much more a California fabric to me than something I’d wear back home in 100% humidity and heat in the summer.)

On to our story.

Ways to be of service do not always come in pretty packages, and when they don’t, the chance of the moment is completely in how you unwrap them.

I had a pre-op appointment at the hospital early this afternoon. They were very thorough. They wanted to know absolutely everything.

And I drove that poor nurse nuts.  She was clearly not having a good day before she ever laid eyes on me, and in comes this fuzzy-memoried woman who can’t remember what year she had which complication of lupus or Crohn’s. How long have you had…  How long has this…  Sixteen years or eighteen?  One month of really being an issue, or…?  (How do I know how much is an issue to you when it’s not to me and it hasn’t been to my doctors?)   Blood pressure 86/45 ON the med to raise it?! Do you feel dizzy?  You *don’t*?

Nah, this is normal to me.

She got on the phone to my cardiologist’s office asking for further details to be faxed in, and in came another nurse with an EKG machine. The first one asked me a few questions, rolled her eyes at me, and let the EKG begin.

At the end, (it was normal), the EKG nurse drew the curtain for me to get dressed again and left, and the irritable nurse suddenly heard a sharp exclamation of OHMYGOODNESS! And then, since there was a sink and soap on my side of the curtain, a, “How do you turn on the water!?”

“Foot pedals.” And then she called to me, in rising concern, “Is everything all right?”

Oh my goodness. In the grand scheme of things, well, yeah. In the moment, no.  Going to tuck in my shirt, I had somehow hit the little loop at the top of the two-piece ileostomy bag and–it had never even occurred to me that such a thing could happen–the thing had burst apart across the inside of my lower clothes. I shut it back up and washed my hands, but my stars. It was bad.

I thought back to one doctor who’d told me confidently, “And now that you’ve gotten comfortable with the bag…” where I almost interrupted him to ask sweetly and innocently, Oh–did I say that?

Here’s one saving grace: hot cocoa for breakfast does not stink in such circumstances. (An aside to Dad: I am SO justified! Neener neener. Heh.)

I apologized to the nurse for stinking anyway, feeling that it’s always good to care about one’s impact on others.  She assured me she smelled not a thing.

Thinking back, I was a tad rueful, surely, but I did not get upset. Sometimes things just happen.

And from that point on, she thawed.  She knew and I knew there was nothing I could do till I got home and showered, and I think whatever was wrong with her day, she was probably thinking it wasn’t as bad as walking down the hallway hoping that… my problem didn’t get…worse… (Where’s that guy with that mopping machine?) I wasn’t entirely sure that thing was entirely secure now.

But you know, when that nurse comes back to where she can laugh again in her life, whether that’s tomorrow after a good night’s sleep or whether it’ll take a little longer than that, she’ll be swapping this story with other nurses for a very long time to come. The ileostomy patient who flipped herself off.  Ohmygoodness.

That blessedly indestructible skirt kept my not-tucked-in silk blouse completely clean all the way home.  Nobody walking down the busy main hallway at Stanford Hospital could tell anything was wrong as I went back to my car.

And there was a jumper, for wearing post-op, made out of that same fabric, waiting in a box for me outside my door when I got home.



Ruby Tuesday
Tuesday July 28th 2009, 7:03 pm
Filed under: Crohn's flare,Life

The staph infection came roaring back on cue.

The antibiotics have begun.

The show shall go on. No delay.

The pharmacist said how to take the stuff four times a day while out cold was the surgeon’s problem.

But–no sitting up for two weeks post-op!?  How am I supposed to do thank-you knitting afterwards?  Plan ahead, I guess, and work hard.

The ruby yarn got swatched today–I was determined to play with it at least some to get it out of my system for now, and now I know better what I’ll be doing with it, what changes to make to adjust to gauge.   To be knitted up the rest of the way in its own good time.

A small thud.  A bird hit the window behind me but kept right on flying as I turned to see, veering away from the glass and out of danger, not feeling so great for the moment but thankfully okay.



Tall tails
Friday July 24th 2009, 3:03 pm
Filed under: Crohn's flare,Wildlife

To answer the question–yes, the surgeon encouraged me to go ahead to Sock Summit if I wanted to first: go live your life! The answer was I would dearly love to, but with Richard shaking his head reminding me of the reality of what the Crohn’s is doing right now, there was no way.

Thus I got a phone call this morning from the hospital. Wednesday the 5th it is. (Ed. to add: you know you’re a knitter when you interpret that as one Knit Night away.)

————-

I’d be curious to know if other city dwellers have noticed these patterns.

I finally figured out what was missing when I finally saw one doing it. I don’t know if it’s an urban squirrel thing, ie behaviors stemming from the lack of predators, or a young squirrel thing.  But based on what I’ve seen, it’s definitely the former.

I knew it was important to train our local population from the moment they discovered our birdfeeder, and, playing the wild woman at them, I did–none of the squirrels tries to climb to or leap on it anymore, and if they see me coming, even from inside, they don’t amble away from the birdseed on the ground, they flat-out RUN. Especially ever since the day one fell off the awning onto the concrete in its mad scramble.  Ouch.  (It recovered quickly.)  I guess word got out.

The thing that has changed is this: I’ve always thought squirrels were cute. And part of why I thought they were cute was the way they eat: picking up the bit of food and then sitting up alert, nibbling away with it held to their mouths while their tails are curled tightly up against them shaped like an effort at a treble clef.  Constantly looking around, constantly being alert to their environment. Tuned in. Twitching the end of their tails at the slightest sign of danger to warn others, first just a bit while it’s curled up against them, then, as the sense of danger intensifies, in bigger twitches with their tails spread out like a flag in the wind behind them just before they break out into a run for the trees.

Our squirrels didn’t do that.  No sitting up. No curled tails at all.  No twitching. They just moseyed along, noses to the ground, tails listless and flat, chewing as they went, and that was that. Never sitting up at the table using proper manners. Never holding the food up to their mouths in their paws.  Never warning other squirrels, whether from the trees or on the ground or anywhere ever.

Now that ours have learned to be afraid of me, they’ve started to take note of their surroundings, to sit up a bit, to even curl their tails. (And it looks like a bad comb-over on one that has a particularly thin tail.) Only sometimes and usually only halfway up, but they’re getting the idea. One actually twitched his–it was so strikingly unusual, and shouldn’t have been, that it grabbed my attention immediately.

Sitting up and eating with paws to mouth rather than skulking like a rat–now you’re getting there! Warning others of dangers rather than only thinking about yourself.  Acting more like a member of a community.

I feel like I’ve sent my squirrels to finishing school or something.



Re’s of hope
Thursday July 23rd 2009, 6:18 pm
Filed under: Crohn's flare,Life

Re the palm trees in yesterday’s post: Richard’s reaction was, Oh, they trim those all the time.  Then we drove past them this morning, and he went, Wow. They really did!

Re the acorns in Tuesday’s post: I’ll admit it now, one of my reactions was, oh my goodness, look at all those, that’s almost as big as *my* stash!

Re the surgeon: kudos to him for his reaction to my saying, in response to his asking if there were anything I was putting off doing before the surgery, that I’d wanted to go to a knitting conference in Portland.  (Saying “Sock Summit” to a man I’d just met, much less one about to cut into me, was just pushing too far–I wanted this guy on my side without starting out by weirding him out.)

He got this wistful-looking smile on his face, eyes off in the distance, mouth absent-mindedly halfway open, and then repeated the words,  approvingly but a little wide-eyed, “A knitting conference.”

Yes, I told him, with Richard nodding his head, and explained that I’d written a knitting book (still on sale at Knitpicks) that was selling very well.  He loved it; he told me his daughter was a knitter and that he was going to have to go buy a copy.

Okay, I already liked the guy on the spot and now I’m totally a fan. And in case his daughter doesn’t know about it (note that I have no idea how old she is) I am so going to pass along the word about Stitches West next February right in our own backyard for her.  Heh.

Yeah, (checking the Ravelry membership stats, 398, 424 registered users as of this writing) there are a few of us other knitters out there to help keep her company there.



Managing menageries
Saturday July 18th 2009, 10:54 pm
Filed under: Crohn's flare,Life

I checked my stash when I went to take this picture after getting home–I was surprised at how few I had left.  Time to replenish.

The story: sometimes it’s more about the parents.

There’s a Costco a mile from our house and there were things needing picking up; we don’t shop on Sundays, and waiting till Monday was going to be a pain.  And…  Things were such that if I didn’t go right then, nobody was going and it was twelve minutes to closing time.

I’ve been trying to avoid exposure to germs especially right now.  We don’t need any delays re the surgery.  And yet.  I ignored the crazy bod and asserted, hey, I’m on it, and somehow nobody objected.

I knew I had to be in and out of there pretty quickly and grabbed the few things on the list fast before the ohmygoshthestoreisclosing crowd got too big at checkout.  I had one moment standing in line where I felt like take a deep breath, c’mon, you can make it.

I needed a distraction from the Crohn’s noise, and it turned out, I got it.  There was a toddler in a shopping cart near the door who had been out and about just a bit longer than she could handle. She wasn’t in meltdown mode, but she was quivering on the edge.

And so, it looked like, was her mom, who was gamely trying to keep her daughter happy.  The mom’s dress proclaimed her as non-mainstream.  Whether she was new to this country or not, I don’t know, although so many people are in this area–but one thing I do know is, it’s wonderful but it is also hard to be the mother of a small child.

Little ones mimic not only our words as they learn to talk, but also our moods. They are absolutely unerring in picking up on how we feel. It is so easy to scoop them up and cheer them up and make their entire world wonderful; it is so easy to be cheered up by them; but the burden of parenthood is that when we’re stressed, it doesn’t take long before they are too. And they can be fairly loud about making it known that they want everything fixed NOW.

Which too many in the world at large tend not to approve of, which doesn’t make matters easier.

And yet.  They encourage us to live up to the best in ourselves to make them laugh again too by the very fact that they come around so easily.  How many middle-aged parents, remembering what it was like when their children were little, will make smiley faces and play peek-a-boo with a little one in a cart?  We remember. And we borrow back from Time the delight of pleasing toddlers: all little children are our children too now.

That mom looked like she was trying, but please (glancing in the direction of her distracted husband) get her out of this place and let her go home.

Costco requires its members to let their receipt be looked over on their way out the door.  There was another lineup–again, not too bad.  I pulled my cart over and waved the guy behind me forward as I fished in my purse.

There was just one in there: a bright green handknitted hummingbird from the women’s cooperative in Peru, with a red throat and a flower at the end of its beak.  Cool. I took a few steps over and handed it to the mom:  “It’s for helping cheer her up.”

She looked at me and at it, stunned. She said nothing; I don’t know if we had English in common.  “It’s a finger puppet.  Merry Christmas,” not wanting to invoke religion at all but rather the idea of a gift freely given and not expected back.

I returned to my cart and was almost immediately up to the door guy, and just as I turned going out, done, I glanced back–to where she was waiting for me to. She caught my eye, smiled, and waved.

And her little daughter was happy.

I floated all the way home, feeling like, and *that’s* why nobody else could put things down just then to run to the store before it closed!



January part two
Friday July 17th 2009, 3:40 pm
Filed under: Crohn's flare,Friends

I’ve tried to keep it at arm’s length, but it hogs the air around here and keeps finding its way out in bits and pieces on the blog.

I so dearly want to go to Sock Summit. I particularly wish I could thank Barbara Walker in person for her generosity in letting me use some of her lace patterns within the shawls in my book.

I can’t.

I want to go to Warren’s shop in San Rafael, just north of San Francisco, for one last time before he closes his doors the end of this month, to wish a good man well with whatever comes next.

At least I’ll get to see him at Stitches West next year.

I keep thinking of fun day trips to do with Michelle, and she just looks at me and goes, Are you up to that?

Oh. Right. Well, hey, brownie points for positive thinking.

I made it to Knit Night at Purlescence last night; face time with friends won out, and here’s Jasmin trying on the Monterey, to my great delight at her enthusiasm over it.

I talked to pathology today and arranged to pick up my slides to take to my new surgeon (my old one having left) at Stanford.  There is one more test to run first that might delay what seems surely inevitable at this point.  I’ve been bleeding at least ten times a day, no meds are working, (I know–same old, same old), it could easily fistulize and cause an emergency, and that 10″ stump has to go.

When so many of you were praying for the Humira to work last January, and it seemed not to?  But: the rectum healed up enough after those doses that they were able to staple it off rather than creating another stoma with it. Given what the thing has done since then, I am grateful in the extreme for that–it has made this situation far, far easier.

Right now all we can do is wait while I try not to waste my breath wishing the operation  were weeks in the past already.  That day will come. I’m holding my blankets close for comfort: Robert’s, (skip about halfway down the post), the one Elizabeth‘s group made, the two Anniebee‘s group made, and the one from the South Bay Knitters I’ve had for several years now that they made as a congratulations on getting “Wrapped in Comfort” accepted for publication. I still have the nametags on their squares telling who knit which.

I have a new pattern I wanted to rework in a laceweight with more detail than the fingering yarn I first knitted it up in, and what shows up on my doorstep today from Lisa?… Baby alpaca laceweight, my favorite, gorgeous gorgeous gorgeous and dyed and gifted on the spot as soon as she knew.  Wow.  I can’t wait to dive into it. There is such a joy in creating something that’s never been in the world before and then sharing it.

As so many of you did for me.  Thank you, Lisa. Thank you, every square knitter and afghan put-er-together-er and every person who has prayed, read, Thought Good Thoughts.  It all helps, and I wrap it around me gratefully.  Thank you.  This is just a blip, and we’ll get through it just like the last time.



Grrr
Monday June 08th 2009, 3:08 pm
Filed under: Crohn's flare,Politics

Remember when the employee of Caremark, the prescription distributor my insurance company contracts with, told me they weren’t sure they wanted the liability of selling me my prescribed Humira?  At a time it looked like nothing else would keep me alive?  I wanted to say to them, all drugs have side effects and if you can’t handle that simple fact of life, what on earth are you doing in this business?  And why do you have any say whatsoever?  You’re just a supplier. My insurance has (FINALLY!) approved that Humira.  It is approved by the FDA for the disease I have.  Send me the flippin’ med, fer cryin’ out loud, since it’s one I cannot pick up at a drugstore and cannot do anything about on my own.

And we all know how that one went. Nada, despite frantic phone calls from us, from my doctor, even from that Caremark employee’s secretary responding to me by walking around the floor trying to find where that woman went so she would finally take my call again and do the right thing.

And then my readers saved the day by bombarding them with messages till they not only caved when the weekend was over, but they actually grovelled.  Which was a little too satisfying for my own good.

So. On the Sunday of Memorial Day weekend, as I’ve written here, I was in Urgent Care again in great pain with a new flare, and one of the things the doctor I saw did was to prescribe me Zofran.

When my Crohn’s flares, I barf.  I never did once during all my pregnancies and I used to pride myself on having an iron stomach. Shows you what I knew.  So.  It is somewhat unusual for Crohn’s to cause barfing, and I can assure anybody that thank you, I’d prefer to be normal on that one.  But all the iron-stomach thinking and determination I’ve tried gets me nowhere these days: in the hospital, they had to keep me on two different high-powered IV anti-nausea meds at a time pretty constantly.

I could draw you graphic pictures of what I do on Phenargan, the entry-level med. Let’s not.

Based on all that, the Urgent Care doctor prescribed me Zofran instead, and rightfully so.

Which the insurance company denied. And not only denied, but since it was a holiday weekend, they had nobody on staff to even begin to appeal it to to get me through the long weekend. The doctor filling in for my Dr. R. reiterated to them a few days later my need for that med; with my very low blood pressure, barfing is an emergency and I need to have access to it.

I got a letter Saturday. Not from Blue Cross, my insurer, but from Caremark, who, like I say, they contract with, and who my local pharmacy had to get the okay from.  And I quote:

“The request was denied for the following reason:

The patient is not receiving moderate to severely emetogenic chemotherapy, total body irradiation or fractionated abdominal irradiation. The patient is not less than 18 years of age with a diagnosis of gastroenteritis and dehydration.”

I don’t have cancer so go ahead and barf. Nice.

And we wonder why the insurance companies don’t want the accountability that would be a natural part of the competition of having people having a choice of a government plan vs. them?  Right now, their only accountability is done legislative piece by piece, state by state, as outraged people get the one part of medical neglect they’ve been subjected to fixed by the demand of the law, while other parts wait for someone to suffer loudly enough.

My friend and hero Marnie took on a quarter million dollars in medical debt to adopt her kids, because at the time insurance companies were allowed to deny coverage to babies till they’d proven they were healthy their first month and forever if they weren’t.  That loophole was so egregious as to spark a Federal law outlawing it, too late for her.

We need a better system.  We need the will to do it. I’m not one demanding a single payer, but I do say, and loudly, that the insurance companies MUST be held accountable.  And the only way to do that, short of lawsuits that drive up healthcare costs and enrich the lawyers, is if they have true competition, which they do not now.  You know why they’re fighting so hard against the government providing an optional plan.  They’d have to change.



Happy birthday, Dad!
Friday June 05th 2009, 10:59 pm
Filed under: Crohn's flare,Family,Wildlife

imgp1959I called my Dad today to wish him a happy birthday. (This is an old photo but I think it captures him so well.)

He gave me a mild scold that I’d been talking about birds on my blog and avoiding telling what’s going on.  I allowed as how that was true.  But they’re so cute!

So.  How ’bout them peregrines?  Two were snoozing at the end of the ledge this afternoon, and one gets up after awhile and decides it’s time to go play.  He (of course it’s Veer, who else) nudges his sister with his beak. She’s snoozing. He tries again; nothing doing. He picks up that big foot of his and gives her a decided shove.

Veer–let me explain this to you.  I am ignoring you.  I am ASLEEP.  Notice the closed eyes?

He puts his foot out again and broadsides her.  Waits for a response.  Nada.

Does it again, at which point she turns her head away and does all but roll her eyes, which are now finally open.  VEER!  I. Am. NOT. getting. UP!

On the other side of siblinghood, yesterday, when Kya was up on that roof drying off from her ordeal, a report came in this morning that said that she’d flattened herself down in the way that’s referred to as “pancaking,” the way the babies sleep, with feet out behind and bellies flat, to soon see one of her siblings (one report said Veer, one, Ilahay) who’d flown up there to keep her company.  The arrival pancaked down beside her and stayed there till Kya was ready to pick herself up and give it a go again.  She was not alone.

She ended up eventually safely back in the nest.

I don’t know if that was her on the ledge today with her brother or if it was another sister.  C’mon! There’s a gorgeous world waiting out there for us. I’ve seen it!  Let’s go fly!

Give it a rest for now, okay, Veer?

Oh, alright, be that way, and he half flew half ran off down the ledge and away.

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And just because it’s Dad’s birthday and he wants me to, okay, yes,  I’ll add a report.  My Dr. R finally got back from his sabbatical, something I’d been waiting for (along with probably half the population in town, it must feel like to him.)

Bleeding below the endpoint of the colectomy surgery, pain above in upper GI, although less of the latter now.  So.  I’m to go on prednisone again while hoping it’s not enough to set off a diabetes reaction again, come in for x-rays next Thursday and see him again the next day, and meantime he scoped that bleeding stapled-off stump.  (The big G search engine is not my friend on any further description here and that’s probably more than you want to read anyway.)  Totally Crohn’s-y looking.  Further surgery is one eventual option, but not yet.  Biopsies taken.

And I had not told him anything about it nor said anything to her this morning, but it was all I could do not to snicker as he surprised me by telling the nurse I’d “already been prepped” for the scope: she had shoved a pamphlet at me last week with pre-sigmoidoscopy dietary restrictions.  I’d tried to explain to her that there was no colon.

She insisted.

No connection.  Does Not Apply.

She still insisted.

I drank my thoroughly-dairy-containing hot cocoa yesterday morning and this with a feeling that it was an act of defiance.

Guess who was assisting at the scope.  Not that I’d said anything to her, but.  A lesson to myself not to roll my eyes at any nurse ever, even just from within, because you never know when you’ll need them, and besides.  Who doesn’t need a little gentleness their way anyway.  It was probably at least partly a language barrier, which must be very difficult for her and I of all people, with my deafness issues, knew it.

Meantime, I am enjoying my time chuckling at the antics of teenage birds acting so much like my kids did and my siblings and I before that, while grateful to good parents who helped us learn to spread our wings well.  Happy birthday, Dad!