Tuesday, August 28, 2012

Where did the month go?

So here we are at the end of another month of me being neglectful. But I've been busy! No, seriously!

I've been spending time with my adorable niece Marissa. She is soooo smart already and she's not even a month old yet. And goodness, she is a cutie.

Aaaaahhhhhh baby!
I've been doing a little demolition/renovation at my parent's house, trying to get it ready for when this little one is mobile.

Other than that, you know, I just hung out with Hugh Laurie for a few hours.

We hang out in black and white cause we're so cool.

Oh? You didn't?

Oh fine, I didn't either...

I should clarify. We didn't hang out... but I did sit five rows away from him playing freaking amazing blues music. I cried. I literally cried. I was full of so many emotions - excitement, amazement, jealousy, sorrow and probably a dozen others.

It was the coolest thing I've ever seen. Seriously.

He is a god on the piano, especially for someone who taught himself essentially as I kinda did. Can you say inspiration?


And in case you doubt this was him (which I doubt but meeeh?):

That was the 19th and I'm still freaking out. I am FREAKING OUT.

Sigh. It was amazing to hear him sing and if you have not you need to GO. LISTEN. NOW. Or watch this video from the show I was at:


St. James Infirmary (live)
Swanee River (live)
Unchain my Heart
Mellow Down Easy (live, seems to be the opener for a lot of shows - it was for ours)

Now that I've turned you onto a New Orleans style jazz blues baby in the handsome and clearly capable hands of Hugh Laurie, let's turn to why I love this man.

He's Hugh Laurie. Duh.

He has helped me through my illness. He provided a 9-year-old me with something to laugh at in order to distract me from the pain of my illness with Black Adder. He helped teach me about the medical world with House - and helped me to be a better advocate for myself as well. Through the character of House, I decided it was okay to take medication and to see the doctor, to use a cane, and to be a sarcastic bastard. Through this music, he has helped me to cry when I needed to and to push through the pain to play music that I love despite ill-working fingers. The man has virtually affected my entire life.

Side note: I've been trying to write him a thank you note but I either cry all over it or feel like I share too much or try too hard to be like him. Oy.

He's the most hilarious, witty, and intelligent British actor I've ever seen. And I love Patrick Stewart, so this super means a lot coming from me. But Hugh is a different breed than most - he can be hilarious and then turn around and pour his heart out in a dramatic role or as an amazing maker of music. He is a writer as well, and has done pieces for some of the most prominent newspapers in the world. He and other television stars started a band to help the Haitians after the earthquake a few years ago. Above all though, the man is bringing back amazing blues and jazz in a way that just tickles me. Watching him play you see that he truly loves this music - he loves it with his entire soul. And he uses that affection to make you feel these emotions too.

I say I hung out with Hugh because watching him play that's how I felt. He included us in the songs, encouraged us to sing and dance with him, and even thanked audience members who did so. For me, it was a once in a lifetime experience that I want to do over as soon as humanly possible. If you have the chance to see him, dooooooo it and do it soon. The emotional coma afterwards is crazy worth it.

Monday, August 6, 2012

Happy Birthday Lucy!

Lucille Ball was born today, August 6th, in the year 1911 - making today what would have been her 101st birthday. After her father's death, she and her brother went to live with their grandparents. From a young age, she loved the theater. She and her grandfather would go to shows together. Eventually she decided to break into the business and attended drama school like a boss.

She adopted a stage name - Diane Belmont - and got parts in a few Broadway plays as a member of the chorus in addition to modeling for Hattie Carnegie. It seemed like Lucy was beginning to really make a break into the business. But her life was about to change forever.

While getting fitted for an outfit to model at Hattie's shop, Lucy began to experience a horrible burning pain in her legs. Shortly afterwards, she was in bed for several days with symptoms akin to pneumonia or a bad case of the flu. Her doctor sent her to an orthopedic clinic where rheumatoid arthritis became a part of her life.

At the request of the orthopedic doctor she saw, Lucy began treatment with what she called some kind of horse serum. Once her money ran out, she went to live with her mother and stepfather, who decided he needed to lecture her on taking care of herself. Clearly the stigma that chronically ill people did something to bring on their illness is nothing new.

Her mother, however, was more supportive. She spent hours and hours trying to console Lucy, from cheering her up to trying to rub away the aches in Lucy's legs. Over time, Lucy's pain subsided enough that she could try to stand. Not only was she weak, but Lucy's RA had already caused a deformity - her left leg was now shorter than the right and turned sideways. In order to try to correct it, she began to wear weights in her shoes - something she continued to do for years.

In all, Lucy's horrid onset episode of RA lasted for two years. She had to learn how to walk all over again. There was no returning back to the days of being a chorus girl. Instead, Lucy returned to modeling for Hattie and was able to even become a Chesterfield cigarette girl like a boss. She decided that Hollywood would be the next step.

Lucy had parts in many movies during the 1930s, earning her acting street cred through walk-ons in productions from the Marx Brothers to the Three Stooges. In 1940, she met Desi Arnaz in the movie "Too Many Girls." Their relationship had some rocky points and eventually ended in divorce, but Lucy and Desi were always close. After all, he helped make a lot of the business decisions that ended up making her a household name.

Together, Lucy and Desi built an empire in the television world breaking all kinds of records and being the first to do many things - including talking about pregnancy on television. She became the first woman to run a television production company after her split from Desi.

Growing up, I had no clue about Lucy's RA - heck, I didn't even know up until the last few years. Through my sleepless nights dealing with this itchy Still's rash and pain that wouldn't stop, I loved watching Nick at Nite and the wonderful old shows on it as a distraction. My favorite were Get Smart, Bewitched, and I Love Lucy. Humor is one of the best ways of dealing with pain for me, and Lucy was a part of that for me.

Going back and watching the show now, I'm amazed. During production of the show, they specifically wrote it to try to avoid making Lucy stand or walk too much - especially avoiding camera angles that might show her difficulty with walking or cause her more pain. It's amazing to watch how they worked it all. She was so funny and so brilliant despite the fact that she dealt with so much pain. To say that she is an inspiration to me would be possibly the biggest understatement ever. She is so much more than just a funny face or a famous redhead. Her perseverance and tenacity serve as a guide for me in how to live my life. I only wish that she hadn't died on my first birthday so that I could have met her and spoken to her about her journey.

Here are some of my favorite pictures of the gorgeous Lucy. The ones where she is blonde are from around the time her RA hit or just before.

Saturday, August 4, 2012

Welcome to the world, Marissa Mae!

On Wednesday, August 1st, 2012, at 7 o'clock pm right on the dot, my sister had her first baby - Marissa Mae.

Missy waiting to get swaddled again
She is 7lbs, 13.2 oz and a healthy 21.5" long. She has amazing motor skills already and I'm just waiting for her to get old enough to teach her wonderful things about this world.

It is really hard to not smile around this baby.
And I got a haircut! Well... and dyed my hair reddish. I love it. But no where near as close as how much I love this little bundle or my amazingly strong sister who - despite pain meds not working and wearing off - pushed this little girl out naturally. Gosh, she is so strong.

I hated seeing her in pain but she's so happy now.
My sister got ill shortly after we found out that Still's was my new buddy. She has had it essentially a few months shorter than me, and I'm coming up on 19 years. Kelsey will turn 21 in January and hasn't ever really had treatment for her illness. A big part of why I blog is so that others know what the two of us go through with our fights against Still's, and so that they will know what strong fighters we can be. There is no better example of that than my baby sister.

Over the years since I began this blog, I've talked about my history with sexual abuse - which we both have been through. I have also talked about how scary it was when she had a seizure a few years ago, and how I thought I was watching her die. To see her not only healthy but pushing out a baby was, needless to say, the most amazing experience I have ever been through. I am so grateful that I was able to be a part of this special day for the person I love the absolute most in this world.