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.

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.

Anne and Mary Anne asked about my meeting Rachel Remen. Here’s the story.

Dr. Remen did a booksigning at Kepler’s, a large independent bookstore that is a local institution. I love her “Kitchen Table Wisdom” and her “My Grandfather’s Blessings,” and made a point of going to hear her. This was a little after “Grandfather’s” was released.

She talked a bit, she read from “Grandfather’s” a bit, and then she asked the large crowd for any questions or comments. One woman told her how much she’d enjoyed the books; the next one went on and on about saving the planet, imploring Dr. Remen to write about the dire condition of the earth. Dr. Remen heard her out, then gently said that this was clearly this woman’s passion and that the questioner would do well to write the book she had in mind herself for what she could bring to it.

Then she said she had time for one more question. There were a lot of people and many hands went up. I was about a third of the way back in the crowd, and thought, she’ll never call on me. I can only wish. I raised my hand, but only barely; I wasn’t sure she could even see that I did.

There was what I can only describe as a sense of white light that somehow passed between us as she looked in my direction and called on me anyway.

Like the others had done, at her invitation I stood to ask my question. I tried not to make it too long. I told her:

I have lupus. I also have a hearing loss. I have an ear doctor who discovered that the cause of my growing loss was a severe reaction to aspirin, and I quit taking any and the progression of the loss stopped.

Ten years later, I developed Crohn’s disease (something I knew Dr. Remen could definitely relate to.) I was put on a med that, with my history, put my hearing at risk, and I got sent back to that ENT for testing.

He walked into the examining room at the edge of tears, and asked me, “WHY are YOU!! being put on ototoxic drugs!”

I explained that I had Crohn’s now. He stood there a moment, taking it in, and affirmed, “That’s bad.” Another breath. “But…*I* thought you had breast cancer, or lymphoma, or…” as he shook his head, grieving at the loss.

(I didn’t say to Dr. Remen that I have a Daniel Wallace lupus book that says that 80% of lupus patients whose intestines start bleeding die in the first episode.)

I had walked into his room with a heavy burden, and that good man lifted it right off me by his empathy. I walked out with the weight of the world gone. He had heard me, he had been there for me, and he had remembered the cause of my hearing loss–ten years later! I wasn’t just another face passing through, it was important to him that I be okay. He remembered! It felt like my life expectancy was being stretched forward right there in front of me in those moments.

I wanted some way of telling that good man what he had done for me. How much it had meant to me. I knit, I told Dr. Remen–and here I held up a gossamer-fine lace shawl I was working on, by way of show-and-tell–and after reading your book, I knew what I wanted to do. I knit his wife a wedding ring shawl, one that can pass through a ring (again, the one in my hands demo’d) as a way of conveying how grateful I was.

(Note to my readers here: this was when I was new at knitting any kind of lace, much less of that fineness, and had never considered giving all those weeks of work away to anyone other than immediate family.)

I told Dr. Remen, “I did not know what to do or how to say thank you till I read your book. You gave me my voice.”

And then I sat down, as the room exploded in clapping.