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.)

50 Comments so far
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I gasped! Audibly gasped! Sending you a Guardian article about a little progress here in the UK. Little, very little.

Hope the dye pot gets put to its proper use v.v. soon.

Comment by LynnM 01.11.09 @ 2:48 pm

I’m sending prayers your way. I think the answer to your question for the woman at Caremark is: She doesn’t personally know you; you’re just a name to her; she never gave you and your health another thought once she left the office. She obviously doesn’t care about individuals and maybe should be in a different line of work.

Comment by Charlotte 01.11.09 @ 2:59 pm

Something good may come of this. I understand that’s difficult to see now.

Comment by RobinM 01.11.09 @ 2:59 pm

Thank you so much for posting, and letting us know you are a wee bit stronger today. I am happy to have read your words and see your fire! Hugs, Diana

Comment by Diana 01.11.09 @ 3:06 pm

Shame on them! To care not at all for another human being and their suffering is criminal. I wish I could do something more than keep you in my prayers. My brother has suffered from bouts of Chrohn’s and so I have seen the devastation first hand.

But I love that it was a dyepot that helped you in the shower-how fitting that someone who can create art with it, can also fight with it!

Comment by melanie 01.11.09 @ 3:06 pm

Alison, I worry about you and pray that things will move along quickly. Sad to say but people in positions like the woman at Caremark are encouraged to keep costs down. It’s the same with automobile insurance companies.

They see so much of it that they become immune to it. Pretty sad!

Whatever it takes to change the system I’m sure we would all be willing to help. Write letters!!! Make phone calls!!!

Continued prayers for you, Alison. Hugs!!!!

Comment by Joansie 01.11.09 @ 3:07 pm

Still thinking about and praying for you. Hopefully, tomorrow will work out for the humira. It will be so good to have you back to your joyful, inspirational self.

Comment by rebecca jc 01.11.09 @ 3:09 pm

It still makes my jaw drop how people forget they are dealing with people and not tables and chairs!!! I am certain that lady would be giving an earful to whoever did that to her mother or sister or (God forbid) herself! *sigh*

Amazing that you muster enough strength to come to us online and keep us posted… What a strong woman you are!

Enjoy the music of the dye pot and please take great care of yourself!

Comment by Suzanne 01.11.09 @ 3:11 pm

Thinking of you. You have every right to be angry. Stay mad enough to fight this after the Humira. Someone should.

Comment by Michelle 01.11.09 @ 3:20 pm

Keep on getting stronger. Enjoy your shower. Take care of yourself. X

Comment by Anna 01.11.09 @ 3:20 pm

Every time I logged on to look, and you hadn’t put anything new, I worried some more – just to let you know I for one very much appreciate you spending your precious energy on letting us know you are still with us.


Comment by Mary 01.11.09 @ 3:27 pm

This is exactly the kind of thing that drives me nuts. Working int he healthcare system as I do, I deal with similar malarky almost daily and don’t understand what the freaking h-e double hockey sticks is the freaking problem. It is approved for use. It is now covered. What is the bloody hold up? Do they want you to sign papers saying youwon’t sue them? Then say so. But they should stop the freaking run-around.

Sorry, this is one of my hot-buttons. I had to edit some of the,um, bad frank wording.

My thoughts are with you and I hope someone pulls their finger out.

Comment by Carol 01.11.09 @ 3:33 pm

Alison — seriously, I would be using really, really bad words. If there’s a phone number to call, let us know.

Prayers today for you at my church. Angels, God’s messengers, surround you!

Comment by Renee 01.11.09 @ 3:39 pm

For the life of me I cannot imagine shutting off my computer for the weekend and going home if I had spoken to someone in your position. Shame on that person.

Shame on Caremark.

Prayers are continuing to be sent up to the big man from me.

Comment by Amanda 01.11.09 @ 4:15 pm

Alison, How my heart hurts for the pain they’re putting you through needlessly. And I am humbled that you spend your meager strenght to keep us updated. But, oh, my heart sings with the fire you show in your righteous anger! You are an amazing woman! Prayers and hugs being sent your way.


Comment by Candy 01.11.09 @ 4:19 pm

I am so glad to see you are a little stronger. I don’t understand the insurance companies at all. Sometimes the employees/clerks act like the customers are just an interrruption to them, rather than remembering who pays their salaries and they become cold and hard.

Comment by Sherry in Idaho 01.11.09 @ 4:23 pm

Allison, I am so sorry. Some of us remember a time when people did not treat each other with disrespect; some of us are willing to remember when it became okay to treat our fellow human beings with as much disrespect as we could muster; some of us are still in denial. May the scales be lifted from their eye before it is too late.

Comment by Cissy (Scout4700) 01.11.09 @ 4:26 pm

I appreciate your blog postings. thank you. I got a little update from Richard today. The look in his eyes as he talks of you is the look of love. What a blessing you are to our lives in Palo Alto. I would be happy to help put in calls or do whatever else is needed. I am in awe of the beauty of your designs and work, and the power of your goodness which radiates out through your blog, reinforcing the quiet, spiritually anchored person whose physically presence we miss when you are not well. I pray for your Humira to arrive. I pray for it to help heal you.

With high esteem and love,


Comment by Peter Giles 01.11.09 @ 4:27 pm

Glad you’re a little better today, dearheart.
The entire message at church today was about you, about how our lives touch other lives and prepare others for the messages that are intended for us — and I knew things could get better, would get better, had to get better.

With so much love from every corner of this interweb, how could you defy our greatness?

See, I’m confident enough to joke now.

So much love to you.

Comment by Kristine 01.11.09 @ 4:34 pm

Prayers going up for you, and that you receive the Humira quickly. Hope you’re soon working on that afghan you have planned.

Workers often have such strict rules to work under leaving them precious little choice in the matters we think they are in control of. We should be praying for the woman at Caremark, she may be as frustrated and feeling just as hurt and angry as we all are that you aren’t getting what you need. It is easy to let a single person be a target, but it isn’t always that person who holds the final decision.

In Christ’s Love,

Comment by Shelly H 01.11.09 @ 4:39 pm

It’s nice to see you angry. Being angry requires energy, so you must indeed be a bit better than yesterday!

I think people in the US insurance industry must have their hearts and souls removed as a job requirement. There are times where leading with love is the best thing to do – and you are forever teaching me about the far boundaries of that – but other times, people need to have consequences for their actions. This is one of those times. That woman needs a severe smacking.

Hang in there. It’s almost Monday.

p.s. when you’re better, can you explain the difference between Blue Cross and Caremark? I’m Canadian and confused.

Comment by Lene 01.11.09 @ 4:46 pm

I think a person who cared deeply about the patients depending on this coverage would have a hard time staying in a job with a company that puts them in this kind of position- and one who argued too hard for the patient would likely be fired. This is why insurance is such a terrible model for delivery of healthcare. It is my fervent hope that we will all see that recognized in the near future.

Take care. Be well.

Comment by RobinH 01.11.09 @ 4:51 pm

Annemarie and I were home all day, she with a cold, all of us digging out from another snowstorm…and she watched me check the computer over and over again…we are both hoping things will continue to improve for you, and may you get that medicine soon, and may it help you.

Sign me up on that list of people willing to do whatever needs doing.

I am so glad you took a minute to post. I was getting very worried.

Please take it easy, even a shower can be very taxing and tiring.

Peter’s comment above made me well up.

Much love, more strength, patience, strength, love, grace, and love! from way over here.

Comment by karin 01.11.09 @ 4:56 pm

People like that make me sick. Of course she gets paid to treat people that way. I’m glad you are able to update us a little. I pray you feel better soon. {{{{{{HUGS}}}}}}

Comment by tiffibug 01.11.09 @ 4:57 pm

How wonderful to hear from you! You have been in my thoughts and prayers all day.

Comment by Barbara-Kay 01.11.09 @ 5:02 pm

Shelly H makes an excellent point for which I am very grateful (as I am to you all). Pray for the woman. We could all use it. Compassion should always win out.

Lene: Blue Cross is the insurance. They took two days of denying and obstructing before they decided to okay the med. Then they turned it over to Caremark, which contracts with them to do mail delivery of drugs. Caremark’s employee told me they were sending it through their “risk assessment team.” Meaning they were more afraid we would sue if I lived (and suffered a side effect) than if I died? That’s what it sounds like from here.

I don’t have my email program on the laptop, so I’m not answering individually, I apologize.

Peter, you’re better connected than anyone else around here that I know. I would love any help you could provide. I just don’t know what to ask for. I’m still holding out hope that that Humira shows up tomorrow, and that Caremark doesn’t order it tomorrow from Abbott to Caremark to me and take till Wednesday to do it.

Comment by AlisonH 01.11.09 @ 5:07 pm

I’m glad you have the energy to be angry and I’m sorry that people cared so little about a human being and so much for saving money that you had to be angry. I used to deal with BCBS when taking care of my chronically ill ex – their game was to see if you’d lose the energy to fight so they wouldn’t have to pay up. Sadly that industry doesn’t seem to have changed.

I hope you enjoyed your dyepot shower seat – that one made me smile.

Comment by no-blog-rachel 01.11.09 @ 5:20 pm

Oh Alison, I hope you start getting better soon, and that the Humira arrives on Thursday. You’d think since it has been approved by the fda that if a doctor orders it for a patient, even with the adverse effects noted, that they would send it because it is an approved drug. What a wacky world we live in!!! You will be in my prayers.

Comment by LDSVenus 01.11.09 @ 5:20 pm

If Caremark just delivers the drugs, why do they have any say at all in whether or not you get it? I don’t understand. My son’s Humira is delivered (in Canada of course) by the same contractors that deliver to pharmacies. Four or five little syringes arrive surrounded by water packs, then frozen packs, and tucked into a Styrofoam cooler, wrapped in paper and boxed. It’s an amazing amount of packaging for such a small product. It has to stay cool, yet not frozen. It’s an expensive product and I’m sure there would be consequences if it was mishandled and spoiled. Could that be the “risk” they are assessing? I mean, how could a drug delivery company be held responsible for the drug’s effect once delivered in good condition. Wouldn’t the liability for the rest lay with the prescribing doctor and/or the developer of the drug?

Comment by Marlene 01.11.09 @ 6:25 pm

Allison, I so do hope that they get someone working on your side. I was thinking the same that Renee said earlier. Often if you get an e-mail or phone call campaign going they’ll listen. Have you thought of your State Attorney General’s office? I’ve used Michigan’s a couple times and it’s amazing how fast the response is – usually within 24 hours in my case.
I’ll be praying for you and will keep checking here as well.

Comment by Susan 01.11.09 @ 6:35 pm

I’ve been checking on you every day…and hoping you have the energy (and will) to post. Just let us know who you think we should petition–put us on it and I’ll bet things will be resolved with this medicine awfully quickly. I am worried about you and wish you lots and lots of healing. I’m emailing you with a thought or two regarding who to contact…

Comment by Joanne 01.11.09 @ 6:53 pm

Alison – is there any chance that BCBS would let you get a dose (or maybe 2, or your first month’s worth) from a local pharmacy? My bet is that at least one store in a local chain would have some in stock – when I needed to get Enbrel, it took only a few days for my local pharmacy to get it from another local store. My guess is that your local pharmacy folks know you pretty well, and that they would probably work harder for you than some nameless insurance person. I don’t know if your plan will require you to get it only via mail order – some do.

Regardless of all of that, I’m so glad that you’re upright today and doing a little better – I know that, as someone remarked yesterday, God is hearing your name an awful lot these days. He loves you even more than your family and friends do, which is hard to imagine. My prayer today is that he wraps his arms around you and your family members with His peace and comfort, and that His grace will be sufficient for today.

Love and hugs!

Comment by Niki 01.11.09 @ 7:01 pm

Wishing with all my heart that the Humira is at your door first thing tomorrow.

Comment by Diana Troldahl 01.11.09 @ 7:02 pm

Once I left my teenagers at a ski resort near Granny’s house with the instruction that they were to meet us at a certain spot at 5:15PM, the latest time they would get down the mountain if they were on the last ski lift run of the day. At the appointed time, my daughter turned up, but my 15 year old son didn’t. I got worried. I got mad. I thought of all sorts of punishments. The ski patrol was alerted. Then he turned up 20 minutes late. “Sorry,” he said. “I’ve got to return the rental equipment before the ski shop closes. A skier injured himself right in front of me. He told me to go on, but I didn’t feel right leaving him until the ski patrol arrived.” WELL, that is exactly what my son should have done. I swallowed a lot of angry words really fast. Now I am wondering about this woman at Caremark. Did she just go home for the weekend not caring, or figuring someone else would deal with it somehow. Or did she collapse suddenly, and then, in the ambulance, they found Alison’s phone number on a crumpled paper clutched in her hand. I guess we’ll find out Monday.

I once asked my brother in law, a doctor, for an explanation of some very confusing insurance company jargon. Instead, I got a theological discussion of the part of hell reserved for insurance companies.

Alison, stay just mad enough to keep yourself going.

Comment by Laura 01.11.09 @ 7:27 pm

Sweetheart, I just learned about this latest setback. If I could come out there and beat those idiots at Caremark (oxymoronic name, anyone?) to a bloody pulp, I would.

I don’t have the words to tell you how much positive energy I’m sending your way. Much love.

Comment by Lissa who loves you 01.11.09 @ 7:31 pm

Dear, dear Alison, there is an email waiting for when you’re ready to check your email account. Love and prayers.

Comment by Joyce in NH 01.11.09 @ 7:35 pm

Also, if we lived anywhere nearby, I would run over to your house with the shower stool Stanford used that is in our attic. But it sounds like an overturned dyepot is a good solution, and would make a more satisfying drumming sound.

Comment by Joyce in NH 01.11.09 @ 7:48 pm

Hi Alison, I’ve been praying for you. May the Lord touch your heart and bring about a full restoration. May He wrap His capable arms around you as you lean on Him for support, for He is more than able to carry through this ordeal wherever it may lead. I’ll be knitting and praying for you tonight.
“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. For God sent not his Son into the world to condemn the world; but that the world through him might be saved.” John 3:16-17

Comment by Lisa 01.11.09 @ 7:57 pm


My prayers are with you and the lady at Caremark. I pray that the Lord keeps you safe, and that He looks over the Caremark employees in their day to day work which holds the lives of so many people in their hands…

Comment by Michelle 01.11.09 @ 8:23 pm

You are a much better person than I will ever be. After everything you have been through this week you still have it in your heart to be generous and compassionate. I have been thinking of you all day and will keep thinking and praying for you tomorrow.

Comment by sonya 01.11.09 @ 8:25 pm

Please keep going. Know that we are all praying for you. And Sonya sent me over to say hi and pray for you.

Comment by Rebecca 01.11.09 @ 8:48 pm

*love* I can’t think of anything to say that hasn’t been said by most everyone else here. I love you and hope you find what you need soon. You are an amazing woman. My love and all the goodness I can muster to you and Richard and those who surround you both.

Comment by Amy 01.11.09 @ 8:49 pm

So glad to hear you were able to sit up today. I am praying for you.

Comment by Eileen 01.11.09 @ 9:14 pm


I used to work for members of the California Legislature in a past career life. You, or your husband, should contact either Ira Ruskin’s office (he should be your Assemblymember) or Joe Simitian’s office (he should be your State Senator) and ask them to help you. I will e-mail you more specific details.

You are in my prayers!

(aka Northside Knitter)

Comment by Diane in Northern CA 01.11.09 @ 10:02 pm

Hey, check your email for sure! I sent you something to cheer you a little

And yea for showering! I know how I felt last May when I dragged my gimp butt and crutches upstairs to the shower (after a week of sponging). The person above who said taxing and tiring badly underestimates the positive value of being NORMAL, even if it’s only a little bit normal! Plus clean and good smelling is a wonderful lift.

Comment by Catherine mad knitter 01.11.09 @ 10:07 pm

I am so relieved when I check my Bloglines and find an update from you! I worry when there isn’t one…Hope you got that shower, and enjoyed it, too.

Comment by Ruth 01.11.09 @ 10:25 pm

I can only echo what everyone else has said. You are one of the strongest women I know, and one of the best. I pray the medicine gets there asap and starts helping immediately.

Comment by AmyS 01.12.09 @ 12:54 am


Here is the Humira hotline number: 1-800-4-Humira. Perhaps they can facilitate delivery of the drug, or they may be able to help in some other way. Even if it’s a long shot, it’s worth a try. And be sure to stress how serious your condition is.

Sending you wishes and prayers to get better. You have incredible strength. You are in all our thoughts.


Comment by Beth 01.12.09 @ 7:07 am

Wasn’t healthcare reform a big part of your election choice? Sadly, it’s gotten lost in the economic woes, but from where I sit, NEVER has it been more necessary…

When you’re stronger, we’ll rant about these approval services almost every insurance company is using. I’ve had procedures I had to FIGHT for (one surgery delayed by 35 days, after originally being approved), and I’ll save the rest for a good rant later!

Comment by Channon 01.12.09 @ 7:44 am

That you prayed for her…my goodness, you are a good, good woman. A kind and wonderful human being. My heart is aching right now.

Comment by Momo Fali 01.16.09 @ 9:02 pm

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