Monthly Archives: July 2010

Side Effects

This has become a somewhat typical scene in my house – my husband reading through the list of side effects that comes with a medication. Yeeks.

A while back I heard someone say that you are actually more likely to experience the side effects of a medication if you know what they are. So, I devised a plan to deal with it – a simple one. When I’m on a new medication, my husband reads the list. Then I just communicate to him how I’m feeling, which I would be doing anyway. That way, I don’t get the psychosomatic symptoms, but we can still be aware if something’s up that we need to tell my doctor.

Still Awaaaake

I’ve been so excited lately that I’ve gotten so much done, thinking that I must be so efficient or that I’m finally getting a handle on the elusive work/life balance that so few moms achieve.  But uh-duh I realized it’s because I’m not sleeping, thank you prednisone. I’m still waking up way too early. Luckily I’m down to 10 mg and continuing to taper.

But in the meantime, I’m getting up at 3 am daily…so, come the late hour of 8 am, I need caffeine. And I loves my coffee. The fabulous Ben Cooks Everything pointed me to the New York Times’ recipe for Cold-Brewed Coffee, which is pretty much a godsend.

Looks gross, tastes mmmmmmmm.

Like Ben, I drink mine with milk – and I put in a lot of it. But no sugar. Mmm. Makes me happy.

Speaking of makes me happy, I was inspired by our local bakery and made these chocolate-dipped Swedish fish. Probably at 3 am, I don’t remember. What I do know is, I made a lot and have been eating them all week. Fish is good for you, right?

St. Elmo, Patron Saint of Temper Tantrums and Confused Parents

Monday morning my daughter said her first sentence. I wasn’t there – I had left before she woke up to take the train to a conference. According to my husband, she woke up, popped her pacifier out of her mouth, and said “Ahkneemama.” I need mama.

It’s not easy being a working mom, but times like those make it seem just plain impossible.

The conference was for two days, so this scene basically replayed the next day as well. Ahkneemama. Sigh.

So last night around 11:30, she woke screaming. I’m not sure if screaming is the right word. It was guttural and scary. She wasn’t really awake. She was thrashing so much that my husband took her out of the crib and placed her on the floor, fearing she’d really injure herself. It went on, and on, and on. We sat with her, we tried to hold her but that made her scream and thrash more. We chanted. Him: sweetie, sweetie, sweetie. Me: it’s okay, it’s okay, it’s okay. We tried to let our voices reach her but they just didn’t. We pushed the pacifier to her – to her lips, to her hands, but it was like it wasn’t there, the thing that had saved us so many times before. We ran our fists through our hair. We looked at each other. He thought she was too hot and wanted to take off her shirt. I thought she was too cold and wanted to add pants. Maybe it was the mosquito bites she’d gotten that afternoon. Or the cortisone cream I’d put on them. Do you have the answer? No, do you? I’m scared. Me too.

I stood up and got the portable DVD player we use on airplanes and put on Elmo. The screaming stopped for several seconds. She looked, her eyes opened a little bit. Then she kept screaming. Then she stopped again. Her eyes opened wider. She reached for her pacifier. She sat up. Her eyes were wide now. She popped the pacifier out and looked at my husband. “Elmo,” she said. I said a silent thank you prayer to god for creating that beautiful little red monster that somehow reached my daughter when I couldn’t. Thank you thank you thank you Elmo Elmo Elmo. She watched for a minute or two, and seemed to grow sleepy again. We handed her her Elmo doll, and cautiously switched off the DVD player. We laid her down in her crib and she went back to sleep.

At 2:30 the scene replayed, but she was crying rather than screaming. It was less scary, and yet not. My husband went in alone and couldn’t get her to settle down. I walked in. She saw me and stopped crying immediately. She reached out her arms. I picked her up and sat in the rocker. She fell asleep right away. I held her tiny sleeping body and stroked her so, so soft hair. Her breath on my neck was heaven and somehow also made me sad. This happened again at 4 am. My husband said, I think she missed you. Ahkneemama.

In the morning she was all smiles. And hugs, so many hugs. She wanted to hug me, she wanted to hug her daddy. When we would hug her, she would start to laugh. There’s my beautiful girl. I need you too.

Bruise Watch 2010

I’m not sure why, but when I get a bruise I get obsessed with watching it fade. I think because it’s so rare for me to actually bruise, since I’m never really actually doing much. So my current obsession is this huge bruise on my knee, I’m not even sure how I got it.

 Here’s the bruise when I noticed it matched my skirt. Lovely.

In the spirit of science, I took another photo today.

So, the bruise appeared the morning after my first Humira, but not in a spot where I injected. Weird.

What it’s Like to Get Humira (For Me, Anyway)

Yesterday I had my first Humira treatment. I wasn’t sure what to expect, but it all turned out fine.

The medication was shipped directly to my office, and when it arrived I hopped into a cab and went straight to my GI’s office, where a nurse had me watch a video about self-injections using the pen. It was very similar to the videos on their website.

Humira is one pen per month, but the first time you do it you have to do four, and then two more two weeks later. I was nervous, but the nurse insisted that I do it myself. She gave me the practice pen, which was great because for some reason, what freaked me out most was the loud click.

This is what the practice pen looks like with both caps removed.

 I was glad to have the nurse there to make sure I did all the steps right. First you look at the medication through the window to make sure it looks right. This turned out to be a pretty important step, because one of the pens did not look right and I ended up having to set it aside and use one of the extras instead. Next, you clean the area you’re injecting with the alcohol pad, which is included. You remove the grey cap, then the purple cap (they call it the plum cap.) Then you squeeze your skin, place the pen on it firmly, and press the plum button. It shoots the tiny needle into your skin and then the medication slowly goes in. You’re supposed to watch for a yellow bar to come down in the medication window, but I was doing this on my thighs, so it was a little hard to see. So the nurse said I should listen for a whoosh to make sure it’s done – and it’s true, you can hear a little whoosh. Then, you pull the pen away and put on a band-aid.

So, it hurt. It did. The needle didn’t really hurt, but the medicine stung. I had heard beforehand that you should leave it out to get to room temperature, but the nurse said she didn’t buy into that, so we did it straight from the cooler. Next time around I’m going to insist on letting it get to room temperature to see if it makes a difference.

In two weeks I go back to the same nurse for 2 more shots. After that, I’m doing it on my own!

Overall, I think it was a really good experience. I don’t have any bruising or redness on my legs, and I don’t feel bad in any other way. I really hope this medication works, and I’m looking forward to coming off the prednisone.

Contact Your Senators Today: Save Federal Funding for IBD Research

The following information was sent out by the CCFA today. Please think of someone you know with Crohn’s Disease (hint hint) and contact your senator today.

You can contact your senator by clicking here: http://capwiz.com/ccfa/issues/alert/?alertid=15260256

CCFA Message:

We need your help to protect a critical federal program benefiting the IBD patient community. For the past five years, Congress has provided funding to the Centers for Disease Control and Prevention for an IBD Epidemiology Program. This unique program supports research conducted by CCFA on the incidence rates of IBD, why the course of the illness varies among individuals, and what factors may improve patient outcomes. Gathering this data is critical to advancing our knowledge of IBD and is essential to the quest for better treatments and a cure.

Unfortunately, continued funding for this research is in serious jeopardy because President Obama’s fiscal year 2011 budget recommends eliminating this program. The good news is that Congress will have the final say as to whether the program continues to receiving funding. The Senate Appropriations Subcommittee that funds the CDC is scheduled to mark-up their FY11 funding bill on July 27. We need you to take action today: Contact your Senator and encourage them to fully fund this important initiative!