Humira was approved for Crohn’s in Feb 07.

A hospital would have to order each dose from Abbott too.

Blue Cross should have been set up to Fedex from Abbott to patients immediately in emergencies: Dr R ordered it Wednesday, I should have had it Thursday.

Being paid to deny or obstruct patients their return to full, productive, good health in the prime of their lives: what a bitter way to earn a living.  (And how are the benefits?)

To the lady at Caremark whose name I’m not putting here: how could you DO that? How could you just walk away for your weekend, wondering if I would die if you did? Of something entirely treatable.  Would you do that to your sister? Your mom?

To everybody who contacted Caremark, thank you. Once I get better, my representative will hear from me, and so will the Insurance Commission.

Now. I’m trying to get up the energy to take a shower. (So yes, today’s a little better.) We figured out a method: sit on an overturned dyepot, since our wooden chairs really wouldn’t do.  I like the idea.  Drumbeats of water to celebrate sitting up.  When I think I can for long enough.

(Ed. to add: I put this in the comments, but it’s important enough to put up here too: the woman at Caremark may be just as stymied and frustrated as me; we should pray for her in her job.)

Really bad day.

No Humira.

Finally at least got hair brushed. Pecking letters on laptop lying down.

Let me try again to finish this, I’ve been working at it in bits and pieces.  I can sit up for short times…

Dr. R’s nurse called this morning, and her voice was dancing: she told us to call Caremark at this number.

We did. Blue Cross had finally authorized the Humira.  But: Caremark had not.  They were running it past their risk assessment team. And they were still trying to decide what the billing would be, what the co-payment would be.

I was stunned. Were they afraid of the liability of selling me a dangerous drug? It IS dangerous, I know that–I read the experimental results and side effects re its near-cousin Remicade before I started that five years ago: it could cause MS.  Lupus. (Beatcha.)  But you do what you’ve got to do.

Richard assured me all pharmacies run all meds through a computerized thing so that one med won’t cause damage alongside another. Okay, but that doesn’t take hours.

Several hours later, they were still working on it.   I told the woman if there were anywhere we could drive to within 200 miles of the San Francisco Bay Area to pick it up, we would, that this was a life or death situation.  We knew it wasn’t something a pharmacy would have lying around on the shelf, but if they could somehow get it to one of their Caremark-affiliated pharmacies if it was a problem getting to us, then okay?… Whatever it takes!

She sounded very sympathetic.  She said they were waiting for “authorization from the doctor.” I called my nurse back, who exclaimed, “They *WHAT?*” And vowed to immediately take care of THAT problem for me!

And from there on out, all we could get through to was the voicemail of the lady at Caremark. The receptionist even tried her supervisor for me.  Forget it. It is after 7:00 pm Central time, the time they close up for the day and I assume the weekend.  They bailed on me.  There is no Humira.

And yet… It could well be that tomorrow morning it will be there at our doorstep; I just don’t know.  They wouldn’t tell me.

But in spite of all that mess, I have to add one other thing: yesterday, given how awful I was doing, I asked Richard and he called our friend Eric and in the evening, Eric came over and the two of them gave me a blessing, Mormon style.  A way of saying we have done what we can; we put it entirely now in the hands of God in our moment of need.

And in that blessing with their hands on my head, Richard felt impressed to say out loud something we both already knew: that family was praying for me, friends were praying for me, people I didn’t know were praying for me.  And as he said that

Okay stop a moment and collect myself here

As he said that, I got a sense of the tiniest glimpse of the love of God, at His joy that His children were looking out for one another and caring for one another, and that all those prayers and love and Thinking Good Thoughts, thinking beyond themselves to a fellow human in need, mattered.  And made a difference.

I knew then that I would make it to when this Humira comes, whenever that might turn out to be.

I want you to know I do feel your prayers.  I had a sense of each individual one said for me while I was being given that blessing.  It was powerful.  I can’t begin to describe…  You do much good, every single one of you.  And I am profoundly grateful.

And a little stronger today for it.

With the rising inflammation, my cardiac cough has made a comeback. Love that lupus, too.

My husband’s employer with great fanfare in November told us that they now had an advocacy setup for healthcare for the chronically ill among their employees’ families; someone to turn to if insurance was being difficult over a needed med.

My Dr. R called me today, frustrated.  Our Blue Cross PPO was resisting ok’ing the Humira; he was hoping I would nevertheless get a phone call from Caremark, their pharmaceutical distributor, today, saying they were sending it, and he made a point of telling me to tell them to FedEx it, to tell them it was an emergency. Well, yeah–and I’d pay the extra for weekend morning delivery too if need be in a heartbeat.

I decided to call that advocacy number; it was morning, when my energy is at very low ebb, but I needed to get the ball rolling.  I got an RN willing to answer health questions, but as for the promised service, well, I guess someone got laid off?  The nurse transferred me instead to the number at Blue Cross so I could go argue for myself.

And she sent me to the wrong number.

The person who answered didn’t know how I got there, but knew, after taking my identification, that I was in the wrong place and started to tell me that.  Lucky for me, I was too deaf to immediately get what she was saying, and in a voice that surprised me at how very thin I sounded, with no whine, no complaint, I simply stated a terribly-vulnerable truth: “I am trying not to die.”

That stopped her short.  I continued, “I need Humira.”

We spoke slightly, and I said, “I have Crohn’s. I’ve run through every other drug on the market. I need Humira.”  It took me several breaths to get that out; I guess morning was the right time to call after all.

Her voice softened a bit. She told me this was the provider line, that I needed to call the patient number on my insurance card.  I thanked her, and meant it; that little bit of improvement in her voice, no longer resisting me, was important to me.

I didn’t call the patient number.  Dr. R’s working hard enough and I was hesitant to go further to mess things up for him.  I was too tired to hold the phone any more at that point anyway.

But I realized I had been routed to the same number where Dr. R would have been passionately arguing for me.  And I knew I had offered this woman a stark moral choice: would she, on whatever level was available to her, advocate now for me?  There was no denying the truth in my words–I knew she felt them.

Or would she turn away?

It’s after 5:00 pm Pacific, and Caremark has not called me yet.

Answering Karin: there’s a huge risk of infection in a hospital setting and I am not in good shape, so they’re trying to keep me out of there as long as humanly possible. Even though steroids haven’t worked for me in the past, they added them to my mix Monday night to try to help tide me over, just in case they might do some amount of good; the bleeding has indeed lessened somewhat. That’s a welcome first.

So yesterday I felt like a squirrel on crack.  Wired does not begin to describe what 40 mg of prednisone does.  I felt energetic and it was such a relief–but I couldn’t tell when I was overdoing it.

This is the first time today I’m finally able to sit up for more than a moment.  Mom brought me soup in bed and chatted and has kept me cheerful company, and I can’t tell you how wonderful she is.

I’m going to try to get through my emails by the end of the day, but if you don’t hear from me yet, please know that I read the comments at least for now, and am hugely appreciative for all the thoughts and prayers. They do make a difference. You do make a difference.  Thank you.

My tests cleared me today for Humira.  The (delete delete delete) insurance company, on the other hand, has not.  The mind boggles: my last hospitalization for Crohn’s cost $75,000.  How on earth could they… Do they think they can just wish me away? I know, they’ll cave. But why on earth do they think there’s any percentage in arguing first? Why do they even think it’s a cost-effective measure to hire someone to do that arguing?  And why should that person’s time be wasting my doctor’s, when he is actually taking care of people who need his skills to survive?

I can’t wait to write a much more positive post about how wonderful I feel and how successful the Humira is being.  Hang in there, it’ll happen.  Meantime, thank you.  You’ve helped cheer me and cheer me on.

Mom’s here, Mom’s here!

The doctors have been very reassuring.  Symptoms are being better controlled today, and I’m hoping tomorrow’s finally the day re starting the Humira.

I’ve been picturing all the people who needed there to be another, better med on the market that didn’t yet exist, praying for help.  And picturing a researcher or two with a sudden hunch that felt so right that they pursued it, culminating in this class of meds that makes such a difference to so many people.  The way I see it, there are two miracles at work here: the initial impulse. And the willingness of some human being out there to follow up on it to see where it would lead, hoping it would do good.

And how.

My cheerful, helpful, wonderful mother has more energy than I do on one of my best days and is perfectly happy talking to us and making us laugh while I rest up.  Hey, Dad, thank you for loaning her to us!

Crohn’s: I hit a wall at dark o’clock this morning the 22nd time I’d passed blood in 24 hours.  I can’t have the new med yet. Waiting… Knitting, meantime, is something to aspire to.

Mom’s catching the first flight. Yay Mom!

I have many thanks I owe to so many; I am grateful for your caring.

I was resting tonight, re-reading one of my favorite books, Rachel Remen’s “My Grandfather’s Blessings,” when the visual image came to me of sitting in my usual perch in the other room, knitting a large, soft afghan spread across my lap and way across the couch. Instantly I wanted to be doing that.  Later, I will.  For who, I have no idea yet, but there is an afghan somehow needing to be made: skeins to go through, design ideas to toss around, yarnovers to be wrapped.

But just the mental image comforted me greatly. I had knit just such an afghan; it was for my doctor who had willed me to live last time, when things were so much worse than they are now, who had pulled me through when things were so bad.  As soon as I was able to after I got out of the hospital, I put heart and soul with the encouragement of my family and put in stitch after stitch, hour after hour to share with him some of the time on this planet he had made it so I would have.  To thank his family as well for loaning so much of him to ours in our time of need.

The joy and stunned disbelief and humility with which he accepted it from my hands meant the world to me.

And that experience I can never duplicate; every moment belongs to itself.  But there is a soft afghan waiting to be made and discoveries to commence happening whose beginnings spread out before my eyes as I was reading, and I cannot wait to bring them to pass.

I wonder if anybody but me noticed: yesterday’s post kept changing. The farther away from the worst of the day that it got, the more positive the post became as my head cleared up post-anesthesia.

My Crohn’s blew right past my chemo and progressed.  End of chemo.  More tests must be done.

I said to Richard this morning, “I’m not as bad as I was five years ago!”

“You’re not far from it.”

I wanted to argue with him, but he was right.

I need to cast on for someone.  Create love where there is pain.  To selfishly help heal me as much as anything.

(Edited to add: looking at this is a good reminder to myself that I really am a whole lot better than I was then.)

The first two paragraphs below are for the googling masses:

Do not ever schedule anything for the day before a colonoscopy.  Ever.  I didn’t yesterday, but I have a friend who once had a business meeting scheduled she didn’t get to.

Two: they give you this gallon of thickened saltwater and tell you to drink 8 oz of it every 10-15 minutes.  What they don’t say, but I’ll tell you, is this: fill two glasses, one with the prep stuff and one with a plain glass of water.  Drink the prep stuff with the other hovering near your face, finish swallowing and IMMEDIATELY swish and spit with the plain water to get that taste out of your mouth.  Trust me.  It makes a huge difference.

Tomorrow I’ll start a new lace shawl project. And hey, Kristine? I went all out. I wore your beaded socks today to represent all my friends standing by me.

Being a good little blogger, I brought my camera so I could take pictures of the operating room before they knocked me senseless, but when I told Richard on the drive there, he was shaking his head going, “Oh, no you don’t.”

“But I won’t take pictures of the people!”

“Oh no you don’t, I seriously don’t think they’ll let you.”

So I left my camera with him.

I’m suddenly picturing the doctors scrubbed up and me trying to hand them my camera to put away since I wouldn’t have been able to reach well with that IV in my hand and all, and… Yeah.  I can just picture my doctor thinking suddenly of one more reason to tell my husband thank you.  Although, Richard offered to scan in the Crohn’s-in-real-life! photos we got sent home with and to put them on my blog, and I exclaimed, “No way, no you don’t!”

But what’s a good husband for but to be a good tease when you need one.  Made me laugh.

Out with the old.

In with the new.

Happy New Year’s!

And whatever you do, try not to rig the overstuffed fridge so that the person who’s allergic to dairy will get smacked with the falling milk jug,  ‘mkay?

You know your daughter loves you when she looks at her new pants and laughs and says, “Mom, you HAVE to take a picture of this!”

You can knit a whole lot faster when you already know the road ahead.

Hat #2: down a needle size.  Smaller keyboard (and thus faster to knit), more piano–I like this one.

Michelle pointed out that it needs to be a thicker yarn to be really warm, and I chuckled at my child who was only eleven months old when we moved to California: college has taught her to appreciate warm clothes.

I regret that my children never got to make a snowman in the front yard. I have memories from when I was a kid of my Dad helping our giant balls of snow walk the plank: there was no way we could lift that midsection, so Dad set up a board and with his help we rolled it on up. The head would be smaller and lighter, so Dad simply lifted those up for us, although I remember one big snowman in the yard in front of my parents’ bedroom where it was a challenge even for him and he went looking for a longer board.  Good times.

My kids growing up in California never got to ice skate on the driveway. Or on the Canal.  Or on the Reflecting Pool between the Lincoln Memorial and the Washington Monument like we did, with the Park Service running a warming bonfire on the side.  The Reflecting Pool is something like a foot deep, so if you weren’t sure the water was frozen enough, you weren’t going to get anything but really cold if you fell through.

So. No snowmen.  Yesterday I got a surprise package in the mail, one that hadn’t made it in time for Christmas, but all the better for that.  Totally unexpected.  What… From KC?  And it’s a snowman! Who knits! And sings! And waves his knitterly arms, with his ball of yarn glued to his backside (I kid you not).  Who flies through the air in his red sleigh on New Year’s Eve, delivering yarn to all the procrastinating knitters who didn’t get their Christmas presents knitted in time this year!

And yeah, he waves that nail-needle perilously close to his carrot nose, and I love him all the more for it.  I played it over and over till Michelle put her hands over her ears and wailed, “Make it STOP!”

Ya gotta love a great snowman.

I’m almost afraid to blog this because I know so many people who would be hoping I made it for them.

So. I wanted the black keys in sets of three purls each note, because black keys are raised in real life and purl stitches are too–but not if there’s only one standing alone.  A single purl stitch will sink and disappear between knit stitches, but a trio would have them standing shoulder to shoulder, holding each other up high.

I couldn’t make the math of it work in the small stitch count of a hat.  Thus this simplified version.

Leading to the realization that…I can’t count. So I had to fudge a few extra stitches into the white at the start of the intarsia.  I guess I’ll have to make another one!

So far so good.  But slow.

One thing about colorwork for me is that I don’t care for long loops of yarn hanging across the back side of the piece, waiting to be snagged on something.  I weave the strand not in use across the back of every single stitch.  This makes for slow, patient knitting (Row eight!? I spent all afternoon on this thing and I’m still only on row eight of the stranding colors?!) and a sturdier and I think warmer fabric, well worth the time spent.  (Don’t listen to that person in the parentheses.)

Right now, my yarn is waiting for me to unwind the two balls around each other to get rid of the twist building up.

Two days of overthinking how to create the marvelous stupendous hat I was envisioning and not getting past a tentative cast-on: 13 just won’t go into 70, I’m sorry.

Today I looked at it and suddenly knew, okay, this works.  Plain and simple.  Enough of the kibbitzing–go.  Given that I was too ill to stay past the first meeting at church, then I needed something creative and I needed to be looking forward to making somebody happy: I needed the therapeutic effects of looking beyond myself, and thank goodness that such a solitary hobby lets love be wrapped into every stitch.

About five rows into it, looking at it, part of me suddenly wanted to pout, but that’s not how I thought it was going to look!  Yes, but this works.  Just do it.

Sometimes I have to create a thing once to look at before I can create it just so.  You need the experience to extrapolate from before making more progress.  There will be more than one hat.

I’m glad for the huge, medication-resistant Crohn’s flare I had five years ago–it helps me see that this one isn’t so bad. It also reminds me of how so much good came from it that I’m actually glad it happened.  There’s an example at the end of this post. It’s having it be in the past that was a part that I’d really liked, too, though.

Re the hat.  I find myself marveling that this design all fell into place so easily once I let go of how I was demanding it turn out.