The Week That Could Have Been Worse

Because I had a crappy week, I almost did a whole Kafka thing to start this post, about waking up to discover I was a bug, blah, blah blah.

But I realized, as this is my life, I am certain to have even worse weeks in the future, like getting arrested or something. Oh wait, that’s already happened too (I’ll tell you another time). So I’ll save The Metamorphisis for then. It was a tad melodramatic. A giant cockroach. ha ha ha ha Sigh.

This week it felt like everything I touched either broke, got dropped or went wrong. But don't worry. I'll have so much fun writing about it I will end up not minding a bit. :)

My work week, under pressure for hundreds of deliverables, was almost a total wash because I couldn’t access the remote system to my office for three days. Tick, tick, tick….I will probably be working all weekend to make up the work.

Tysabri infusion totally knocked me off my pins this month. I slept for 14 hours straight afterwards.

Then:

Car wreck and insurance issues. Grrrrrr!!!!

Gas company issues. Grrrrrrrr!!!

Mortgage payment issues. Grrrrrrrrr!!!! Although this one was mildly amusing. Two calls received from the mortgage company. That’s odd. I check online bill pay. Yep, mortgage is paid. I call to check on the problem. I tap in my account number as asked by the automatic system and a sweet little recording tells me everything I already know, how much I paid and when I paid it. And an arrears of $7000. I literally dropped the phone. I started pressing ‘O’ like mad to get a human being. And I got ‘John’.

John had a definite accent, but I couldn’t place it. I started blabbering .

Me: $7000! BLAAAH!!!! $7000! BLAAH!!!! $7000?!?!?!
John: Oh well, thank you Mrs. Cooper, I will ask you to please not worry about that.
Me: BLAAAAH?!?!
John: No, thank you Mrs. Cooper, this is nothing to worry about.
Me: BLAAH!!!
John: No, really thank you Mrs. Cooper, this is not a problem. This was a mistake in the recording.
Me: BLAAAH BLAAAH BLAAAAAAH!!!!
John: Well yes, thank you Mrs. Cooper, I can understand your anxiety about this unfortunate situation, however this is an error which you are not to be concerned about.
Me: Blah?
John: Yes, thank Mrs. Cooper, this was a mistake.
Me: blah?
John: Yes, so thank you, I offer my apologies for the nervousness you experienced.

And at that point I was almost coherent again.

John: However, thank you Mrs. Cooper…

Me: BLAH?

Poor John was experiencing more anxiety and nervousness than I was.

John: …thank you, I am so sorry to tell you this and there is no reason to be upset however there is a $4.02 discrepancy in the statement we sent you and the actual amount that is owed. So we can accept an electronic payment for this $4.02 and as a courtesy we will waive the usual $12.50 fee.
Me: $12BLAAAH50?!?!
John: Oh no!! No! Thank you Mrs. Cooper it is waived, waived, it will not be charged to you.
Me: blah?

It took ten minutes of repetition before he got all my bank numbers because of a very subtle language barrier. Finally I said:

Me: So John, where are you located?
John: Ah Mrs. Cooper, thank you for asking that. Our corporate office is in Iowa.
Me: But you’re not in Iowa, John, are you?
John: Ah, thank you Mrs. Cooper…heh, heh… he laughed nervously…thank you, but we are not authorized to disclose that information.
Me: But it is not Iowa, is it? Or even the United States? Or even this continent, is it?
John: heh heh Thank you Mrs. Cooper, I am sorry, but thank you we are not permitted to disclose that information. heh heh
Me: Ok, well, thank you John
John: Oh, thank you Mrs. Cooper. Have I satisfactorily resolved all of you issues?
Me: Yes, thank you John.

Except for where in the world is GMAC Customer Service. Hmmmm.

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It wasn’t an entirely sucky week, as I did have an appointment with Dr. Wonderful. Except I had meant to change it but forgot and remembered, while I was in the shower, 45 minutes before I was due there.

I couldn’t not go now.

As if I'd miss an opportunity to get more narcotics. Um, I mean as if I’d miss an opportunity to scope out his adorable self.

So I desperately raced to get ready and burst out the door, ten minutes late, with wet hair and panting like a dog. So off I trotted.

He looked wonderful, as usual. Treated me so nicely, as usual. Listened and totally got it about my pain as usual. And then proposed another surgery. As usual? Oy.

He is recommending a partial shoulder replacement to relieve the pain. So as I am writing this, I am watching a shoulder replacement surgery online on OR Live. So far my favorite parts have been the mallet, the drill and the buckets of blood being sucked out of the gaping wound.

Because I am shallow and immature, my true absolutely favorite part was the huge expanse of bare skin showing on the male patient exactly where my breast would be. Call me crazy, but I just don’t feel like having my boob hanging out in front of a bunch of strangers for several hours. Who knows what kind of bad habits it could pick up? hee hee That was just a little boob joke.

But honestly, would you want any of your naughty bits on display for everyone? While you weren’t even awake to hold it up or make excuses for it? Sigh.

So that was my week. In a tribute to Dr. W. I was going to treat you to the bloody, hammering, drilling shoulder video, but I decided to go in a different direction. No blood, lots of beard. lol



For e-mail readers:

http://www.youtube.com/watch?v=0_EFdod4YDo


Is it me or does that audience look kind of…anemic? Who doesn’t rock to ZZ Top?

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An update on Joe: still waiting for his surgery due to complications. I was very sympathetic. I said:

Oh for fuck sake!!!! This is ridiculous. Are they waiting for you to
die of old age so they don't have to operate at all?!?!


It is ruining my Angel of Mercy timetable because I have to have another surgery too, so I have limited time where I can stand by your bedside wringing my hands and looking like Ingrid Bergman in The Bells of St. Mary's.

I was really looking forward to that too. :( They are spoiling everything.



An update on the Behemoth: I love it!!

Labor Day Weekend

A nice relaxing weekend after a super stressful work week.

My friend Joe’s surgery was postponed, hard on him and his family on one hand, but a good opportunity for him to gain some strength over these three days.

The Behemoth and I are getting along.

My parent's celebrated their 56 wedding anniversary on Saturday. They were married on September 5, 1953 at St. Elizabeth's Church in Washington Heights, Manhattan. I came along the following September :).

Our local paper on line has a web site for moms. They had two ‘Caption This’ contests this weekend. I LOVE Caption This contests. How often are you actually encouraged to be a total wise ass. Although none of those other sweet moms even approached my level of wise-assness.



My suggested captions :

"When Mary's mother saw The Face for the 50th time that day, it helpfully reminded her she had to stop at the liquor store on the way home."

OR

"You're just making it up that you're not really my mother!!!"

OR

"You ARE NOT putting me up for adoption!"


The other picture is dead scary:


There's only one possible caption for this picture!

"It was at that moment that little Stephen King first conceived a rudimentary plot for "It" in his head. Along with sundry other murderous thoughts."

I went to our last beach Mass of the season last night. Such a delight. I am so grateful to live at the ocean. And I saw several friends that I have really missed.

I made banana strawberry scones for breakfast this morning and wished I could have shared them with so many of you.




I have so many fantastic, loving, funny and smart blogging friends I wish I could enjoy a cup of tea with in person!

This will be another overdrive work week. I have to reschedule an appointment with Dr. Wonderful because I just can’t take the time. I am not sure what to even ask him anymore. My right arm is essentially useless. The pain is constant. PT makes the pain worse and when the pain gets worse the MS gets worse. It is hard to believe this is the best it will ever get. But if it is, I want to know it and move on.

I have my monthly Tysabri infusion this week too. Can’t reschedule that.

Finally, here is my sweet, constant companion, Isabella.




Happy Labor Day, everyone!

Insider Trading

Tysabri, the medicine I get by IV once a month for MS, has been linked to a number of cases of a devastating, and usually fatal, brain infection again. This is why it was pulled off the market originally in 2004 before being reintroduced last year, http://tinyurl.com/5turuy

Right before the new reports came out, high level Biogen executives (the manufacturer of Tysabri), began dumping their stock:

http://www.secform4.com/insider-trading/875045.htm

…just like the last time:

“The Securities and Exchange Commission filed a settled enforcement action today in U.S. District Court for the District of Massachusetts, charging Thomas J. Bucknum with insider trading in the stock of Biogen Idec Inc., a biotechnology company located in Cambridge, Massachusetts. Bucknum was Biogen’s general counsel until he resigned in March 2005…
…To settle the Commission’s charges, Bucknum has consented, without admitting or denying the allegations in the Commission’s complaint, to the entry of a final judgment permanently enjoining him from committing future violations of Section 17(a) of the Securities Act and Section 10(b) of the Exchange Act and Rule 10b-5 there under. Bucknum also has agreed to pay disgorgement in the amount of $1,938,465, pre-judgment interest thereon in the amount of $102,005, and a civil penalty of $969,232, for a total payment of $3,009,720. Finally, Bucknum will be prohibited from acting as an officer or director of any publicly-traded company for a period of five (5) years from the date of the entry of the judgment.”

(The whole press release, dated 1/12/06, is here, http://www.sec.gov/litigation/litreleases/lr19528.htm)

Here are two things that I would have done instead to make the punishment fit the crime:

First, I would create a foundation and have that $3,000,000 put into a trust fund to financially support people with MS in need. Not look for a cure or bullshit like that, but putting the money where it really will make a difference in the here and now.

Second, I would require Mr. Bucknum to receive a monthly infusion of Tysabri for the rest of his natural life. Whatever would be left of it after being on this dangerous medication. And hopefully he would worry about it constantly.

Judge Judy has nothing on me.

The Slogan

The Tysabri web site has a banner slogan that says “CELEBRATING 2 YEARS OF HOPE.” I think the subtext, in such small print you can only read it if you are an officer of the company, says “…hope that none of these losers dies before we can maximize our profits. Ha ha ha!”

Tysabri is a medicine of last resort for people like me, who just kept getting sicker on other MS medicines.

It enrages me that these people are making a [probably illegal] profit while every month I have to weigh the possibility of a quick horrible death from PML against a slow horrible death from MS.

The MS Society has a political action committee, but it won’t touch something like this because they are in bed with all the drug manufacturers.

What I want to do is inform as many people as possible. Maybe I can put some heat on Biogen, the greedy little dicks. Maybe by the world knowing what scum they are it will hit them where their only interest is: in their bank accounts.

The Future

There are twelve suspected cases of PML now. There were three the last time. It is a known risk because Tysabri makes the blood/brain barrier more permeable, increasing the chances of opportunistic infections like PML. Not to be melodramatic (oh, hell, ok, I’ll be melodramatic; let’s be real, there’s nothing I like better!) but that is what most people with MS die from, opportunistic infections. Pneumonias because we can’t clear our lungs, septicemia from pressure ulcers because we can’t move around or feel our skin breaking down, kidney damage from all the IV Solumedrol, stuff like that. Tysabri is an immunosuppressant, so I am at risk for all kinds of ick that normally would be no issue at all.

You may have read that MS is not fatal. But I think a fatal condition that I develop because I have MS definitely qualifies MS as the cause of death.

Not that I’ve done a lot of thinking about it or anything. lol

I will stay on Tysabri as long as I can. Or, as my neurologist put it, “Until something better comes along.” But every month I get that sliver of fear, is this the time when I am going to get struck by this lightning?

The makers of Tysabri obviously have the same concern, but for a far different reason.