(Taken through the skylight.)

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

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

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

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

It was worth every moment.

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

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

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.

Two childhood memories:

President Johnson threw a party on the White House lawn for all the children of all the US Senators.  We were the grandchildren of one, and we lived close by in Bethesda; we got to go.   The crowd of kids walked in a careful line through a small part of the White House first, and just before we exited into the Rose Garden area, we were handed an extremely cool official plastic white pen with blue and red retractible colors and the words “The White House” printed on the side.  You better believe I took that one to my elementary school to show off.

There was a small Ferris wheel set up on the expanse of lawn, which looked a lot bigger as a kid than it does to me now, and rides on the small ponies being walked in circles.  No way no how was I getting on that Ferris wheel, but I was in heaven with those horses.  I’m sure there was cotton candy and the like, but I remember nothing about the food–just the fact that I could ride all afternoon, and did, and only briefly once did anybody tell me I had to get off to let some other kid have a turn. They had enough ponies to make every child who wanted one happy for just about as long as they wanted.

I came home and told my mom how cool I thought President Johnson was, and that I hoped he would run and win again.

I saw the look on my mother’s face in speechless response, and had no idea what to make of it, other than that, clearly, this was not the great desire of her heart.  But I wanted more pony rides!

Memory number two:

It was the Fourth of July, the late 60’s, and our baby boomer family with six young kids was going with my aunt and uncle and their little ones to watch the fireworks together on the Mall in downtown Washington, DC, the grassy stretch that runs between the Washington Monument and the Lincoln Memorial.  The crowd was already huge in the late afternoon as we arrived, the best spots taken hours earlier and more people pouring in by the minute.  Soon there was hardly room to move.  There was a sit-in of war protesters going on a little further down, with families on their picnic blankets edging right up against ours and a kind of a temporary no-man’s land in between us and the protesters that was rapidly filling up. There were a lot of people there. There was a strong smoke smell going on over thataway that I didn’t recognize at that age; it wasn’t cigarettes.

A number of Park Police on horseback started an ambling pace towards the protesters.  I noticed–I liked the horses.

And the protesters started running.  En masse.  But there was simply no room.

My aunt’s youngest was an infant, and in the sudden terrifying confusion of the stampede, there was a moment of instant clarity: she had pulled a young man down to the ground in front of her and was screaming into his face at the top of her mother-bear lungs as the surge of feet continued around and over and straight through us, “YOU STEPPED ON MY *BABY*!!!!”

He was suddenly more scared of her than the cops or horse hooves and wrestled himself away from her and took off amongst the others still running through our picnic blanket.

That was it. All the adults announced we were out of there, and while the older kids were half-protesting, what, no fireworks, it was a relief to leave. I’m sure we had seen enough fireworks already in my aunt’s face. The baby was okay.

Watching McCain stepping back out of reach and deliberately away from Obama’s outstretched hand and smile, it hit me that here is a man who does not know how to be friends with his friends. How on earth then can he wage peace in an unfriendly world using the skills of diplomacy he does not have?  “Bomb bomb bomb Iran.  Who cares? The Iranians?”  (I’ve seen the video, sir, it was not the one-on-one joke you claimed in the debates, it was before a crowd.)

Imagine the good we could do if Iranian parents (and others), their leadership aside, felt that the mighty US wanted to make the world a better place for their children, too, rather than they worry that our leader wants to trample them personally out of mob-like fear.  Imagine the American President telling them that he, too, had gone if only briefly to a public school in a Muslim country; that he knew personally that there were dedicated teachers there and here’s how he’d like to help them improve their educational resources.

Amy Goodman, the syndicated columnist, wrote this article after being violently assaulted by the police for trying to interview protesters at the Republican National Convention.  Along with her fellow reporters, her press credentials were ripped off her neck for telling the cops who she was and who her fellows were, and then *she* was charged for it and hauled off, along with her fellows, who were bleeding. They were told after they were beaten that they had the right to cover the police’s work only if they were embedded with them, ie only if they went where they were allowed to go and saw what they were allowed to see.

Alright. Voters?  We have been through this before.  We thought Simon and Garfunkel’s protests, “I said be careful, his bowtie is really a camera” were quaint old songs now.  Back to the future?

Or do we choose a better one?

My ballot says mark it with blue or black ink only, don’t use the red.

Done.

Making progress… Sorry about the fuzzies; I knit better than I photograph, this was my fourth try.

Did anybody else see this? We were watching the debate last night via MSNBC, and McCain and Obama were shaking hands with the crowd afterwards, the thing still being aired.  Just before the cameras cut out–and I’m guessing McCain must have thought they already had–the two men happened to find themselves next to each other again, and Obama reached out with a warm smile to shake McCain’s hand again, not as part of the debate performance but as two colleagues.

And McCain stood there stone-faced, absolutely refusing to.  Cindy McCain finally shook Obama’s to cover for her husband’s gaffe.

(Edited to add: with the help of Momo Fali, this is the scene from a completely different camera and angle to what MSNBC showed.  In this one, you can see McCain patting Obama on the back, but when Obama turns in response and reaches his hand out, McCain steps back away from him and waves him towards Cindy McCain.  I would say that that was still rude, but it definitely is far better than standing there arms stock still like it had seemed. Thank you for the link and the clarification!)

Santa Rosa tomorrow, Stephanie, Stitches East; my life suddenly played Fifty-Two Pickup on me in the late afternoon today, everything thrown in the air.  I have never been so glad to hear that child of mine on the line.  She sounded like I felt: a small voice, hesitating, “Mom??…!!”

And then we threw our arms around each other across the phone lines.

I wrote a blog draft during the two+ hours I waited to hear, two. long. hours. that were longer than being in labor, needing desperately to do something and dealing with it by addressing it sideways, talking about how, when a kid turns 18, they’re not covered under the family health insurance anymore unless they’re a full-time student, and if they get sick enough to be forced to drop out, then what the heck do you do?  They can’t get employer-funded coverage themselves if they’re too sick to work, and even then, as grad students, once they hit 23 they are dropped from the family coverage by the insurers: yours, mine, anyone’s.  I wrote that that’s part of why I’m voting for the man who wants to offer to all Americans the same health insurance plan that members of Congress get. Go Obama.

All that doesn’t really matter so much to me right now, and I’m debating deleting that part entirely from this post.  No arguments, please, not today.  All that matters to me is that my daughter was able to pick up that phone herself and call home and talk to me.  After a few minutes, relaxing, she put on her best Monty Python imitation and joked, “I’m not dead yet!”  And she told me how grateful she was to her brother and sister-in-law for taking care of her. I am so glad they’re at the same university.

The on-campus student health center had sent her to the hospital, fast, thinking she had a blood clot in her lungs.  What Ruth Schooley died of.  We have known for the past year that there was a risk of that.  Turns out it wasn’t that; the CT scan indicated a virus inflaming her lungs.  But there were those hours this evening where I’d gotten the simple message from my son of, I’m taking my sister to the hospital for a pulmonary embolism, more later.   And all I could do was wait and pray hard.

She’s okay.

And he had dropped everything on the spot to help her be okay, despite the fact that he’s taking the LSAT tomorrow.

Stray thought: I never thought I’d see the day when I would totally agree with–Newt Gingrich. Wow. Thank you, Suburbancorrespondent, for the link re the $700 billion bailout idea: I do like my radio in closed captions.

The silk that Claudia dyed that Sandi gave is turning into a Michelle shawl; the second strand is Misti Alpaca laceweight from my stash and my dyepot.  The knitting started off a bit slowly, till my husband told me I was going to have to get me a ghostknitter.  I don’t *think* so!  Back to work!

I’m suddenly picturing Wall Street multimillionaire welfare kings being handed some needles and some Red Heart (got to be frugal, you know, yes, it has its uses, and no, guys, you don’t get qiviut this time) and told to chill awhile till something intelligent gets worked out.