Herrad and Richie - this one is for you

Post Pump Trial Thoughts

Send me an angel

BR's mother, Diana, and Aunt, Beth, arrived this evening from Louisiana. We started a pork roast before they arrived, and they finished cooking dinner, as well as the clean-up. Emotions are still high, but no longer irrational.

And God looked down and said, "You can either have a clear head and intolerable pain, or you can have controlled pain, and live the rest of your life in a fog. Choose wisely."

blogging through tears

Pump trial -- day two -- twice the dosage -- no effect.

Back on patches and break-through. BR is loopy as all get out, and still says the pain is an "8".

disappointment. anger. sadness. give me a minute to make up the guest room. looks like y'all will be staying for a while.

If "10" is how it feels to be hit by a truck ...

... does that make "9" what it feels like to be hit by a Buick?

Today was day one of the pump trial. At 6pm last night, I cut BR's Fentanyl dosage by 2/3rds and stopped all breakthrough pain meds. By the time he was on the doctor's table at 2pm today, he had been at a solid "9" on the pain scale for several hours.

And he's still at a "9".

I'm praying that today was placebo day.

He'll be back on the table for day two of the trial tomorrow. It's really hard to watch him suffer like this.

The intrathecal pump trial is a go!

BR and I just got back from the Pain Management doctor's office, where BR passed his psych evaluation. We now have the go-ahead for an intrathecal pump trial this coming Monday and Tuesday.

On one day, pain medication will be injected directly into BR's spine. He will then be observed over the following 4 hours and effectiveness will be noted. On the other day, a placebo will be used in the same procedure. If the medication is effective, we'll move forward with having a pump implanted.

Medtronics has some good information about the pump on their web site. They have a video, too.

Tilt-A-Whirl Your Troubles Away

The Tilt-A-Whirl has always been one of our favorite rides at the State Fair. This past year's fair was no exception. Thanks to Cathy for capturing the moment.

Gay Clergy don't merit air time, huh HBO?

Reverend Robinson delivered his prayer this afternoon, but you wouldn't know it from the HBO broadcast. For unknown reasons, the prayer ended up on the cutting room floor, and the televised portion of the event opened with a speech from Denzel Washington.

I'm sure conspiracy theories will be flying around the blog-o-sphere. Still, HBO owes the viewers an explanation.

Here's what Reverend Robinson said:

Welcome to Washington! The fun is about to begin, but first, please join me in pausing for a moment, to ask God’s blessing upon our nation and our next president.

O God of our many understandings, we pray that you will…

Bless us with tears – for a world in which over a billion people exist on less than a dollar a day, where young women from many lands are beaten and raped for wanting an education, and thousands die daily from malnutrition, malaria, and AIDS.

Bless us with anger – at discrimination, at home and abroad, against refugees and immigrants, women, people of color, gay, lesbian, bisexual and transgender people.

Bless us with discomfort – at the easy, simplistic “answers” we’ve preferred to hear from our politicians, instead of the truth, about ourselves and the world, which we need to face if we are going to rise to the challenges of the future.

Bless us with patience – and the knowledge that none of what ails us will be “fixed” anytime soon, and the understanding that our new president is a human being, not a messiah.

Bless us with humility – open to understanding that our own needs must always be balanced with those of the world.

Bless us with freedom from mere tolerance – replacing it with a genuine respect and warm embrace of our differences, and an understanding that in our diversity, we are stronger.

Bless us with compassion and generosity – remembering that every religion’s God judges us by the way we care for the most vulnerable in the human community, whether across town or across the world.

And God, we give you thanks for your child Barack, as he assumes the office of President of the United States.

Give him wisdom beyond his years, and inspire him with Lincoln’s reconciling leadership style, President Kennedy’s ability to enlist our best efforts, and Dr. King’s dream of a nation for ALL the people.

Give him a quiet heart, for our Ship of State needs a steady, calm captain in these times.

Give him stirring words, for we will need to be inspired and motivated to make the personal and common sacrifices necessary to facing the challenges ahead.

Make him color-blind, reminding him of his own words that under his leadership, there will be neither red nor blue states, but the United States.

Help him remember his own oppression as a minority, drawing on that experience of discrimination, that he might seek to change the lives of those who are still its victims.

Give him the strength to find family time and privacy, and help him remember that even though he is president, a father only gets one shot at his daughters’ childhoods.

And please, God, keep him safe. We know we ask too much of our presidents, and we’re asking FAR too much of this one. We know the risk he and his wife are taking for all of us, and we implore you, O good and great God, to keep him safe. Hold him in the palm of your hand – that he might do the work we have called him to do, that he might find joy in this impossible calling, and that in the end, he might lead us as a nation to a place of integrity, prosperity and peace.

AMEN.

How many invocations does a new president need?

Yesterday, the Presidential Inauguration Committee announced Initial Talent Line-up Confirmed for Lincoln Memorial Event:

Musical performers scheduled for the event include Beyonce, Mary J. Blige, Bono, Garth Brooks, Sheryl Crow, Renee Fleming, Josh Groban, Herbie Hancock, Heather Headley, John Legend, Jennifer Nettles, John Mellencamp, Usher Raymond IV, Shakira, Bruce Springsteen, James Taylor, will.i.am, and Stevie Wonder. Among those reading historical passages will be Jamie Foxx, Martin Luther King III, Queen Latifah and Denzel Washington. The Rt. Reverend V. Gene Robinson will give the invocation. Rob Mathes will be the music director and arranger for the backing band, which will support all of the artists. Additional performers will be announced as they are confirmed.

While I was reading this paragraph, I started humming that song from Sesame Street.

One of these things is not like the others.
One of these doesn't belong.
Can you tell which thing is not like the others
now before I finish my song?

Despite the obvious misclassification of the opening invocation prayer as entertainment, I couldn't be happier that Reverend Robinson will be there to deliver it. As the first gay man to be elected bishop in the Episcopal Church, Reverend Robinson is viewed by many as a divisive force, even causing some congregations to splinter away from the church. Unfortunate as that is, I'm reminded of one of my early software development mentors who taught me that "you have to crack a few eggs to make an omelet." Reverend Robinson puts it this way in his book, In the Eye of the Storm: Swept to the Center by God:

Everything we do in our congregations, our workplaces, and our families -- all of it has a ripple effect. And the actions we take in the Episcopal Church have ramifications around the world for our brothers and sisters in Christ. Sometimes, we are told, those ramifications are negative and divisive. But sometimes, especially to the ears of the discounted, despised and marginalized, those ramifications are breathtakingly holy, bringing life and hope to those whom Christ came to serve."

I'm a Christian who doesn't believe that homosexuality is an enormous sin, an abomination, or anything other than God challenging me to find purpose in a world that would rather I didn't exist. The church in which I was raised stressed the importance of family, of the sacraments, and of love. When I came out, I was told that my love wasn't the right kind of love, I would never receive the sacrament of marriage, and any family I built would be inferior. I hadn't received communion at a Christian church since.

Many members of BR's family attend the Gilliam Methodist Church in Gilliam, Louisiana. When BR was diagnosed with MS in 2007, the church did what churches do best -- they came together to support the family. But not only that, they reached out to San Francisco to support BR and me. The regular cards, letters, and e-mails of encouragement from the pastor, choir, and individual church members really helped us as we adjusted to all the change. So when BR and I attended Christmas Eve services with the family in Gilliam, I felt perfectly at ease receiving communion.

---

WE ARE ONE: THE OBAMA INAUGURAL CELEBRATION AT THE LINCOLN MEMORIAL, the Opening Celebration for the 56th Presidential Inaugural, will be presented exclusively by HBO on Sunday, January 18 (7:00-9:00 p.m. ET/PT). HBO will televise the event on an open signal, working with all of its distributors to allow Americans across the country with access to cable, telcos or satellite television to join in the Opening Celebration for free.

Saddleback Church tries to electronically disguise their message

Back in a previous post, I expressed my anger at Mr. Obama choosing Rick Warren to deliver his presidential invocation. In that message, I provided a link to the Pastor Warren's Saddleback Church website, which made it clear that homosexuals could not be members of his church.

What do you find if you click on that link today? Not a single word about gay, homosexual, or sexual sin. Could it be that Mr. Obama was able to open Pastor Warren's eyes to the possibility that discrimination based on type of sin is not acceptable in the Christian faith? Has Pastor Warren's and his followers' hearts grown three sizes over the Christmas holiday?

Not in the least.

Though they took down the text, you can still find the same message in an audio recording stashed away on the "Bible Questions and Answers" page. The content of audio recordings is not indexed by search engines like google.com, yahoo.com, and live.com. So the change in the page appears to be just an effort to "lay low." Anyone want to bet the page goes back to the original text after the inauguration?

You're a mean one, Mr. Grinch.
You really are a heel.
You're as cuddly as a cactus,
You're as charming as an eel.
Mr. Grinch.

Types of seizures

I've been reading up on the different types of seizures since BR's incident on Friday. The second seizure seems to be a pretty typical Complex Partial Seizure. He could tell it was starting (called an "aura"), it didn't last long, and he had a short memory lapse during which he was unresponsive.

The first seizure, however, seems to defy classification. (Why am I not surprised.) It most closely resembles a Tonic Seizure, in which muscles stiffen. That type of seizure usually lasts less than 20 seconds. BR was rigid and screaming/moaning for longer than that. But he never convulsed, which is the sign of a Tonic-Clonic Seizure.

Searching the forums at MSWorld, seizures are not unheard of, but they are atypical. (Again, why am I not surprised.) Keppra, the new anti-seizure drug, seems to be a reasonable choice. In addition to the anti-seizure effects, back in 2003 it was shown to be effective against spasms caused by MS.

New Year, New Symptom

Yesterday, BR's MS broke new ground. While having his hair shampooed, he experienced a seizure. In all, it lasted a little over five minutes, during which he was unresponsive and screaming. He even stopped breathing for a short period. Josue called for an ambulance, which arrived a few minutes after the seizure ended. After being checked out by the EMTs, BR seemed back to normal, so we declined the ambulance and made plans to visit the ER on our own.

About 15 minutes after the EMTs left, as Josue was getting BR into his wheelchair, BR had another, much less severe seizure. But it was enough for us to call the ambulance back to bring BR to Seton Medical Center.

I'll let BR take it from here.

Roadtrippin'

The weather was great over the weekend, so BR and I took a trip out into the Hill Country. As usual, we got a pretty late start. We were hoping to catch the sunset at an open air restaurant in Marble Falls, but had to settle for enjoying the beauty from the road.
BR's chair loads directly into the passenger seat, allowing him to join in on the front row view of the scenery.

It was dark by the time we made it to Marble Falls, so we pulled over, and let UrbanSpoon pick a place for us to eat. After just a few shakes of the iphone, we were on our way to Margarita's Mexican Restaurant. Great margaritas, weak chicken fajitas.

A quick stop at the Dairy Queen for dessert and we started heading back home.

But wait! What's this we see?
It's the Marble Falls Walkway of Lights!

We couldn't resist.






With our Christmas Spirits fully recharged, we made our way back to Austin...
... and topped off the spirit tank with a couple martinis at Woodland.