more cat pictures

A few days ago I brought home a fresh blueberry muffin for Ryan's breakfast. He was asleep and it was time to get up, so I put it next to his nose on the pillow. Waking up to fresh-baked muffin smell must be nice, right? He didn't budge.

Finally I nudged him. "Hey babe, it's time to wake up."

He didn't open his eyes but stirred a little. Told me good morning. Then he inhaled deeply and said:

"You smell good!"

Summary of Xkot's Twitter updates from the past 24 hours:

• 13:22 A great editorial: tinyurl.com/6pgzql "People want to do nation-building... But they want to do nation-building in America." #
• 15:51 The Shuffle is very satisfying. It's simple, inexpensive, well-designed, fun. Great for when my big older iPod is inconvenient. Thumbs up. #
• 01:25 @Topbear The cheapest iPod product is the 1GB shuffle... $49 new or $39 refurbished at store.apple.com. I have a 2GB model and love it. #
• 04:18 Updated xkot.net as a portal to my online presences (twitter, flickr, facebook). Old blogs feel isolated in the social network era. #
• 04:23 Recount airs May 25th on HBO. Features Kevin Spacey, John Hurt, Laura Dern, and... MY MOM as an extra. #

By LoudTwitter

I wanted to participate in the free bone marrow registry. It's something I always intended to do and the current online drive led me to get started. Sadly: If you have a severe medical arthritic condition such as rheumatoid, reactive, psoriatic and advanced stages of other types of arthritis, you will not be allowed to register.

I would have liked nothing more than to do this, but since I can't, I'm hoping I can get at least one or two friends to give it a shot. You could be the one-in-a-million chance someone has to live. All it takes to register is a cheek swab done by mail. Here are the details.

Summary of Xkot's Twitter updates from the past 24 hours:

• 20:05 Iron Man was EXCELLENT. Make sure to stay after all the credits for a special geek-pleasing treat. I actually cheered with glee. #

By LoudTwitter

Summary of Xkot's Twitter updates from the past 24 hours:

• 17:19 In a bad mood and looking to pick a fight. #
• 17:59 If I were to ever get a tattoo it would currently be: The Dude on one shoulder as an angel, Walter on the other shoulder as a devil. #

By LoudTwitter

Summary of Xkot's Twitter updates from the past 24 hours:

• 01:33 We have an awesome gay barber named Jesus. I'm really overdue for a visit. #
• 05:39 There are several new homes for sale within a block or two of our house. Six miles from Windsor! Who wants to be my neighbor? #

By LoudTwitter

I found the best desktop background for everyone's favorite bread-addict, chibi_masshuu: Please do not lick the screen, Matt.

Summary of Xkot's Twitter updates from the past 24 hours:

• 05:31 Just 3 days after my first Humira injection my arthritis is 90% better. It's good to be able to tie my shoes and climb stairs again. Hooray! #

By LoudTwitter

I posted a couple weeks ago about being diagnosed with psoriatic arthritis and the decision to start a TNF-blocker drug like Enbrel, Humira, or Remicade. I was nervous about the risks that come with disrupting your immune system's normal responses (lymphoma in particular scares me) but the arthritis had gotten bad enough to make me consider all options. Yeah it could cause weird shit to happen - but I could also get hit by a bus. You take your chances.

This past Monday I visited the rheumatologist to have my knee drained of excess fluid and discuss drug options. Good news came in the form of my x-ray results: my joints aren't nearly as damaged as the doctor feared - just very inflamed. I won't need knee replacement surgery. He decided to not even drain my knee in favor of waiting to see how the drugs work.

The doctor offered to let me choose which of the 3 drugs I preferred, but I asked to just go with whatever he felt would be most successful with the least risk. He said all things being even, Humira had the best co-payment assistance offer so why not try that? Since the drugs can easily run up to $20,000 a year (!!!) and the average co-pay is in the hundreds of dollars, that sounded good to me.

Dr. White told me the injections usually aren't too painful unless they're given while the drug is still cold, so he asked his nurse to take a sample out of the fridge and wait a few minutes before showing me how to inject myself. Humira comes in an easy-to-use pen injector I'll be sticking in my leg every two weeks. The doctor had really talked up how small the needle was and how I wouldn't feel a thing so I was fairly nonchalant about the whole thing - needles don't bother me much. I took the cap off the pen, pressed it to my leg, and hit the purple button.

"HOLY SHIT! FUCK! OW! Um.... I'm sorry about my language. THAT HURTS! Oh my God I can't believe I cussed at a nurse. I'm really sorry. SHIT DAMMIT THAT HURT."

It seems either the sample was still mighty cold or the needle hurts a lot more than advertised. The nurse didn't mind me shouting and said most of the patients react that way. I'm glad she wasn't offended. When I later watched videos of people shooting up with Humira on YouTube I saw that pretty much everyone yelps a bit.

As I walked back to the car with Ryan we talked about my hopes for the treatment. A couple days earlier things were so bad I needed Ryan to tie my shoes - I just couldn't do it without hurting. The doctor said I'd probably see results within 4-6 weeks. I remember telling Ryan "maybe I'll have clear skin and no pain by July! That would be incredible!"

The side effect list for Humira is pretty long and I experienced a couple. One was the most bizarre headache of my life. It hurt in 4-6 random spots around my face. My fingers and feet felt "weird" in a way I can't pin down. Not exactly tingly... just odd. Those went away after a couple hours and were replaced by 48 hours of intermittent nausea which led me to miss some work.

I had seriously low expectations and hoped, at most, to see some improvement by June. So imagine how it felt to notice the psoriasis on my skin taking on a different texture and appearing less red within two days. By Wednesday night it was easy to see that my skin was improving. Refusing to believe it was the medicine I told Ryan it must be from moisturizer I'd used, but then he pointed to spots on my back I could never reach and said they looked better too. Not gone - not back to normal - but better is wonderful news.

Then the most amazing thing happened last night. I woke up for work and got dressed. I put on regular shoes - not my usual slipons - and tied them without thinking about it. It never occurred to me to take my Mobic (for pain/inflammation). My mind was on other things. I didn't realize something was different until I got to work and was in the middle of climbing the two flights of stairs to my office.

I was going up the stairs and I didn't hurt. AT ALL.

I felt just fine.

I nearly cried, I was so happy.

I realized I'd gone about 36 hours without taking any Mobic, Advil, or Tylenol. I haven't left the house without taking at least a handful of Advil in 5 months. The arthritis had gotten so bad so fast that it totally changed my lifestyle. I seriously regretted buying a 2-story house because of the stairs. I couldn't hold a gallon of milk in one hand. I felt like an old man so suddenly. And now... I'm so much better. My hip twinged a bit this morning, and my wrist isn't 100%, but I'm not debilitated anymore.

I can't describe how blessed I feel. I don't know if it will continue. I've read about people with terrific results for a few weeks who then revert back. The insurance company could deny me the medicine. This could get taken away from me again. But for today I have some of my life restored and it's the most amazing thing in the world.

We had a nice lunch with Ryan's dad and nephew today. This is the first picture of them together since Ryan got the tattoo of Christopher's nickname on his arm.

Summary of Xkot's Twitter updates from the past 24 hours:

• 14:08 @pepster "This one goes to eleven" is the best idea for an ipod engraving yet! #

By LoudTwitter