Monthly Archives: October 2010

Don’t Forget to Vote!

Of course, voting for the next government leaders on Nov. 2 is incredibly important, and everyone should do it.

But that aside, please take a minute to vote for my friend Jayme King, for best meteorologist in Phoenix! Woo!

Image from Fox

Click here: http://arizonafoothillsmagazine.com/best-of-our-valley-2011/voting/123.html

You can vote daily!

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Save the IBD Bill-Take 5 Minutes to Help

Wanted to share this message from the CCFA – what are you waiting for? Click to help!

Save the IBD Bill: Only a few weeks left!
Time is running out for the IBD Bill. A new Congress will convene in 2011, and there are only a few more weeks left for the current Congress to be in session. Your legislator is a member of the House Energy and Commerce Committee, and the IBD Bill is under their jurisdiction. If the Bill is not passed by the end of the year, we are back to the drawing board — a new Congress means that a new Bill must be introduced, new co-sponsors must sign on, and the entire process will begin again. Please ask your legislator to move this critical bill through their committee before the end of the year!
It takes so little time to support the Bill and help the 1.4 million Americans living with IBD. Here are other things you can do to help:
–Post a “call to action” on your Facebook page or Twitter feed
–Call a loved one and ask them to send a letter or help spread the word
Send an e-mail to your friends and family letting them know how much this Bill means to you, and what they can do to help.
If you’ve already done any — or all — of the above, we thank you for your support, and ask that you give us just five MORE minutes of your time. Please do what you can! Many voices, working together, will help push this Bill forward at this very critical time.

Take action today!
Need help?
 
Contact our Information Resource Center: 888.694.8872 or www.ccfa.org. For tips, sharing, and support from other people with Crohn’s disease or ulcerative colitis, join our free CCFA Community site.
Our mission
 
To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

Crohn’s & Colitis Foundation of America • 386 Park Avenue South, 17th Floor, New York NY 10016
Phone: 800-932-2423 • E-mail: info@ccfa.org • Web site: www.ccfa.org

My Latest Dr. Max Visit

Okay, I feel like a jerk. Because I didn’t like Dr. Max in the beginning, and now he’s really growing on me. I think it’s easy to shoot the messenger, to not like the guy who tells you you’ve got Lupus and then orders a phlebodomist to stick you. Right?

I had a check-in with him today and it was more on the good news front. I’m doing well on the Humira and all my joint pain is gone. He explained the concept of complement levels, which rate your immune system activity. He said that normal is around 90-180 and I was at 78 back in June. My most recent blood test in August said I was up to 86. I had another blood test while at his office and will find out the results later this week.

As for the fatigue I’d been reporting, it’s possible I inadvertently figured out that mystery on my own. Someone mentioned to me quite randomly that this time of year people should take Vitamin D supplements, and that I should get tested for D deficiency if I’m feeling tired. I said to myself, forget that, I’ll just start taking the vitamin and see if I feel better. That was about 2 weeks ago, and from day one I noticed a strong difference. I no longer feel that horrible end-of-the-day slump where I wanted to just lie down and sleep, which led me to when I wrote about singing in the car.

I mentioned the D vitamins to Dr. Max (1,000 mg), and he said he’d check my D levels to see if I need a stronger dose, say 50,000 mg. He also said I may not need the sleep study. Nice! I’m still going to do the Zeo though. Today my ZQ was 67 due to our little nighttime adventure, but I seem to be averaging about 70.

From Heaven to Hell and Back Again

My sister and I live on a houseboat on the San Francisco Bay. It’s large, for a houseboat, but cozy, and its open format allows for gentle warm breezes all day long, as well as a spectacular view of the deep blue ocean as far as the eye can see. Our company on the slow days is just each other and our dog Murphy, a placid, tan colored mastiff.  But on the nicest days our home fills with friends, and our dad will come by to make sure everything’s running well with the houseboat, tinkering about and fixing things up. I’m sitting and relaxing by myself one day when I hear a strange cry. Suddenly, the bright sun and gorgeous blue water swirls and turns dark, and blinking I open my eyes to find that everything is dark and different. I’m in my bed, and my husband is saying to me, “Carly, come help me please, I think her diaper’s leaked.”

Ah. Here it is, my real life. I hear her cry again, and then she says my name. My new name. Mommy. I get up. She’s half asleep but upset. She’s been teething this week, and so moody. Her pants and blanket are wet. She doesn’t want us to change her. She struggles when we try. It takes us twenty minutes to finally get her out of her wet clothes, and another 20 before she calms down enough that we can try to put a new diaper on. We finally have to force the diaper and pants on her, and since we three are already exhausted, this effort comes from fumes. It’s already an hour since I woke up.

I give her a sippy cup of watered-down apple juice. She takes a small sip, looks at me, and laughs. Her eyes are finally bright again, though her hair is mashed to her head in a mix of sweat and tears. She lays down in my arms like she did as a newborn, and her chubby little body relaxes. “Do you want to go back to bed?” She shakes her head no. “Do you want mommy to hold you?” She nods. So I sing to her.

The first is a song I sang to her all the time in her first year, because it was the only thing that would stop her from crying when I’d tried all else. It’s the theme song from a TV show from the 80’s that I watched as a kid. Skidda marink idink idink, skidda marink idoo, I love you. The second is a song my dad sang to me when I was a child. My little girl, I’m dreaming of you, and I think of you each day. Her eyes start to droop. She’s so beautiful that I want to hold her forever. I rock her for a while. Her hands are so tiny.

I place her back in her crib and go back to bed. I can’t sleep. I can tell my husband is awake. We can hear her chewing on her pacifier, awake also. For the next 30 minutes none of us can sleep. And then, finally, blessedly, we do.

A Gorgeous Getaway

Some friends of ours have a gorgeous bit of land about an hour’s drive from our house, and we rejoice when they invite us over because it’s like a mini-vacation. We love their company and their home is just so beautiful, it’s like stepping into another world.

They grew a pumpkin patch for their granddaughter, who is a year older than our daughter, and were nice enough to save a few pumpkins for our daughter to pick. We also took a walk in their raspberry patch, and our daughter (who is normally averse to raspberries) ate them all – oh yes, she ate every single raspberry left on the bushes.

Saturday was such a perfect fall day, and I couldn’t help but take as many photos as I could. Here’s some of their meadow, and one of our daughter holding the astors they picked for us. Oh yes, and they have a stunningly restored farmhouse. Sigh.

It was so fun to watch our daughter run through the fields and stop to look at the little things that caught her eye – a cricket, a leaf, a flower.

Back on the Zeo Wagon, Even Though Life Has Wrinkles

Perspective accounts for a lot. Take, for example, a print I bought for my husband for his birthday over the summer from the amazing 20×200 site. I feel like a trendsetter because the same print was featured in InStyle magazine this month. However as you’ll see from the following photos, there may be one little problem.

InStyle

 

Not in style?

Did they hang it wrong? Did we?

I pondered this as I brushed my teeth last night, another place where I’m often considering perspective. Growing up I knew I’d get wrinkles one day, but I always thought the first would be laugh lines around my mouth and eyes. Because, you know, I will live a wonderful beautiful life where I’m always smiling and laughing. But alas, my 30th birthday hit (ahem, a few years ago) and the first little effers to crop up are worry lines on my forehead. Frick! Now I spend time and money on products with names like “regeneration” and “anti-aging” and even “hope in a jar” and try to wipe away the evidence of the life I actually lead.

But I AM happy, I DO laugh, so I don’t get it. Why worry lines? WHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY????????

Maybe it IS all about perspective. Who knows, maybe my forehead wrinkles when I smile.

Anyhoo, I had stopped using the Zeo for a few days because I had a weird problem with the headband, turned out that someone (not me) got wrinkle cream on it and it had to be cleaned off. (Okay it was me.)

Anyway, here’s my results from last night:

You may have to click on this to enlarge it.

I think I slept pretty great, actually. Well, except about 3 am when my daughter woke up and cried for me, and as I headed back to bed I remembered that I’d forgotten to put the clothes into the dryer, and those clothes included a shirt I wanted to wear, so blah blah blah an hour later I’m still awake. Although I managed to get in a little light sleep before the alarm went off.