They ganged up on me
Saturday January 17th 2009, 2:25 pm
Filed under: Crohn's flare

I spiked a 103+ fever this morning.  Mom and Richard counted off the number of doctors who said that if I kept doing that I needed to be in Stanford.  This being the weekend, the doctors can’t arrange admittance over the phone; I’d have to go to the ER and wait for hours.

So I got that temp down to under 100 and they let up on me.  So far.  And I actually got some food down for the first time in days.

Frozen bowling ball
Friday January 16th 2009, 1:59 pm
Filed under: Crohn's flare

Yesterday was the purest form of hell I ever care to go through.  Drinking two full glasses of barium when you can’t keep a few ounces down…  Somehow with a lot of prayer I did it.  Took a very long time.

Today I’m below 101F so far and am sitting up just long enough to say how good it feels to be slightly more human.

With all those bags of saline in the evening, I felt like an injected and bathed in brine Butterball turkey, and pictured the turkey being used as a bowling ball, thrown down the aisle.  Bumpity bumpity STRIKE!

Alison’s status
Thursday January 15th 2009, 6:46 pm
Filed under: Crohn's flare

To use her own words, “I don’t feel very good.”. Last night we had a scare when her fever spiked up to 104.3F. We got it back down, but they did not like that. Today was labs, CT scan, x-rays, and consultations. She is getting 4 liters of fluids as we have failed to bully her into drinking enough. We are waiting on the medicine to let her body heal.

To those who wonder, I did the original post while at Urgent Care waiting on the IVs to drain into her as she dozed.  She has asked me to post when she could not, and she was not at all up to it today.  I showed the post to her, but I am not sure she really could read it.   Mobile devices can make your life easier sometimes, and posting the status gave me something to do the 6 hrs we were there.  I also introduced my mother-in-law to the joys of an iTouch by letting her watch “The Curse of the Were Rabbit” while Alison slept.  Gotta love Wallace and Grommit.  Besides Grommit Knits.

I don’t like Crohn’s. It is not my friend.
Wednesday January 14th 2009, 1:42 pm
Filed under: Crohn's flare

(Pardon the whine.)  Fever 101 this morning.  Prednisone at half dose, which tends to create a crash-and-burn effect too.Plus the usual Crohn’s-y stuff.

Yesterday I stood outside Richard’s office door at home and marveled, Can you believe it!

No, he answered, but I Iike it.

I’m gradually picking up steam again.  But I’m not walking down the hall yet.

9:20 am
Tuesday January 13th 2009, 2:51 pm
Filed under: Crohn's flare

Last night, when we got home from Urgent Care (again), there was a glorious knitter’s basket outside our door: the very best yarns, cards, a hat, cashmere fingerless gloves–Richard waved each piece in front of my nose but I could barely open my eyes, but let me tell all you local knitters at Purlescence, we were thrilled. I’m still working towards being able to really admire it when I can walk over there a little better.

I answered a text message with three words after we got home and was instantly in the most intense pain for three hours, but I had to let Jasmin know that yes we got it.  I mean, how could I not answer her?  (Well, yeah, I should have let someone else do it.)

So I did not expect today to be great.

I woke up to the phone ringing 8ish? with the UPS guy wanting to know if he could drop it off at the door. Yes. He put the box down at 9:20 and Mom flung the door open and yelled “THANK YOU!” after him.

I’d fallen back asleep and then I woke up with a sense of a profound light bursting over a wall in front of me.

They wanted me at my doctor’s for observation while the Humira went in.  Four epipens today for the first dose.  Lene, you’re right, it stung but oh wow did it feel wonderful to finally have it be going in.

We got home again, I bled some more and collapsed asleep in bed till now.  I am actually sitting up in bed–I can hardly believe it.  Yesterday, moving any single muscle connected to my stomach had me bleeding and barfing, and how many things does that leave you? You can nod your head. You can wiggle your eyebrows. That’s it.  Today is night and day away from that. Not that I want to feel like I do now, but… Hope and the beginning of healing are an incredible thing.

The nurse warned us it’s not instant healing, though; you have to generate new cells. Often takes about a week. But after what I’ve been through, if that week is like right now, I can handle that.  I’ve certainly done worse.

I cannot tell you how much your thoughts, faith, prayers, and messages mean to us and I thank you for taking the time to do it.  God bless all of you.

Monday January 12th 2009, 9:29 pm
Filed under: Crohn's flare

She has been too weak to do more than a little reading today.  We took her in for IV fluids and anti-nausea drugs.  That helps, but is rough on her.  She ask me to post her status, which is she feels lousy.  The good news is the medicine she has been waiting for is shipped and should arrive tomorrow morning.  It is supposed to be very fast acting, which we pray is really the case.  The treatment should start tomorrow.  Then we get to rebuild her strength.  Thanks for all your prayers and good wishes.  She does read all the comments, but is too weak to respond at this time.


Monday January 12th 2009, 11:56 am
Filed under: Crohn's flare

Lady at Caremark got us to someone there trying to expedite–but: first they needed a new copy of the Rx.  Can they explain that to me please?  WHY? Dr R got immediately on it.  Humira might come tomorrow.

Mom spooned food in so I wouldn’t barf it if I sat up.  I love my mom.

Urgent Care
Sunday January 11th 2009, 10:18 pm
Filed under: Crohn's flare

Overdid. IV saline and IV Zofran. Home peck-typing again.

Doctor said weather may be grounding plane? I like that MUCH better.

Not my nicest post
Sunday January 11th 2009, 2:31 pm
Filed under: Crohn's flare,Politics

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.)

Saturday January 10th 2009, 6:49 pm
Filed under: Crohn's flare,Politics

Really bad day.

No Humira.

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

One step forward
Friday January 09th 2009, 6:44 pm
Filed under: Crohn's flare,Politics

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.

So, today
Thursday January 08th 2009, 6:18 pm
Filed under: Crohn's flare,Politics

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.

Squirrel on crack
Wednesday January 07th 2009, 4:37 pm
Filed under: Crohn's flare,Politics

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.

Go Mom!
Tuesday January 06th 2009, 7:56 pm
Filed under: Family

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!

Cavalry to the rescue
Monday January 05th 2009, 4:17 pm
Filed under: Crohn's flare,Family

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!