Monthly Archives: May 2010

Moon Bounce

Yesterday evening my daughter’s daycare had a Family Fun Barbeque, and I took her on the moon bounce. I’d forgotten how fun those were and just thought to myself, why haven’t I gone on a moon bounce in a while? This morning when I woke up and could hardly move, I realized why.  Oh my god, I’m getting old.

The strange thing was, even though now my muscles are loose and no longer ache from the extra exercise, my finger joints still hurt just from my daughter holding my hand. That’s where the Crohn’s hits me first, and it’s unforgiving. The joints in my knee and toes are also locking up.

I spoke with my doctor about a half hour ago, and he wants me to go to Remicade next week, rather than wait another few weeks. I have an appointment with a rheumatologist next month, and after that Dr. D wants to see me to discuss medications and all my options.

I’m starting to get nervous. It’s been 3+ years since I had to consider a new medication, and I have one big, almost overwhelming worry – what if it doesn’t work? I have things I need to do! There’s no such thing as disability leave for a mom. I need to be able to hold my daughter and to keep her safe. And I need to be able to do things like hop on the moon bounce with her when she wants me to. What am I supposed to do when my Crohn’s keeps me from being a real mom to my daughter?

Uh-Oh

Something’s wrong. My joints continued to ache yesterday all day, and were even achy when I woke up this morning – a bad sign. I’m only 4 weeks on my last Remicade, and so I shouldn’t be feeling this way. Also, my stomach was bothering me this week, and that’s a rarity – I was blaming it on my eating habits, but it happened one day when I ate fine.

I think it’s starting to wear off. I think it’s time to look for another medication.

Uh-oh.

Knitting, Stress and Frozen Joints

We had our annual employee art exhibit at work last Friday, and this is how my entry looked. It’s a hippo, fingerless gloves and a hat, all knit. Made me feel good to have my knitting exhibited, even if it isn’t exactly a juried show. Made me feel all arty.

For some reason my joints are freezing up pretty bad today, so I have to take a break from knitting. I had a stressful day yesterday, and I think there’s a pretty direct link to stress and how bad I’m feeling. So, today I am hoping will be all about sunshine & rainbows, and maybe tomorrow my joints will unlock!

Expecting the Unexpected

This weekend was pretty typical for us now: playground, grocery store, assorted errands, etc etc etc. My husband wanted to do some work around the house including painting, so to make sure we didn’t end up with a paint-covered toddler, I took my daughter to Target.

This was my grocery list:

1. Lactaid pills

2. t-shirts for my husband

3. galloshes for my daughter

This is what we bought:

1. beanbag chair

2. chip & dip container

3. bottle of dishwashing detergent

Hmm. So, wasn’t exactly what I expected. We had fun though – trying out the beanbag chairs, playing with the rubber balls, swinging on the porch swing in the outdoor furniture department, and of course throwing a tantrum in the checkout line.

On the drive home I realized I’d done something to hurt my wrist, and immediately the fear that my Crohn’s is kicking in put me in a mood that can only be described as super-foul. It’s that feeling that I’m somehow broken. Something is wrong with me, there is no denying it, and that something is messing up my life in both little and big ways. I hated that I couldn’t lift my daughter from the car because my wrist hurt so bad. Luckily I became aware of the way it was affecting my mood, and kind of caught myself before I started snapping at her and my husband. (And even luckier than that, I realized later that I had done something to my wrist earlier and that’s why it hurt, not because of my Crohn’s. But anyway.)

And that’s where the real unexpected part of life is for me. It’s one thing to go to Target looking for Lactaid pills and come home with a beanbag chair – it’s quite another to go out happy and feeling good, and come home hurting and defeated. But both can have the same results: I didn’t get what I intended. But here is what I do have: a beautiful daughter; a doting husband; a lovely home; a great life. I hurt. I can’t get rid of my stupid Crohn’s. But I’m working on that. I’m working on healing. I’m working on feeling good, physically. And in the meantime, life is good. I am holding on to that tightly.

Trigger Food Binge

I am a wild woman. I am out of control. Well, at least I was yesterday.

I started the day okay. I was running late, so I ate a banana and a string cheese on the train. Downhill from there. We had a special breakfast at work for those who received promotions (including yours truly, yay.) So my mid-morning snack, which is usually yogurt, was two pieces of french toast and a huge heap of homefries. Oooh those homefries were good, honey. So I had another plate more. Let me repeat that: I ate two plates full of homefries.

Perhaps now it’s a good time to mention what my trigger foods are: anything fried, high-fat food, carbonated drinks. I’m also lactose intolerant.

So. I had two plates of homefries. Which, um, DUH Carly, are fried. I had them with ketchup. So. Freakin. Good.

Yesterday was a very busy workday, so I made sure to schedule one of my meetings over lunch so that I’d actually eat lunch: good move. The bad move was having broccoli cheddar soup and a proccuito-brie-mayonaise pannini. Usually I wouldn’t mention condiments, but there was so much mayo on this sandwich that it counts as a 1/3 ingredient. Mmmmmm.

And then I started to suffer.

Now, it really wasn’t that bad. I’ve seen worse – I’ve HAD worse. But it wasn’t fun. I was just so…well…bloated. I just felt like Jabba the Hut.

Big, fat, bloaty, gross, me. To try to redeem myself, I ate some healthy(ish) afternoon snacks. And then I went home, where it got worse. My husband had to work late, so I did the whole eat-scraps-while-feeding-the-toddler thing. Dinner consisted of a handful of Cheerios and parts of a cereal bar that had been squeezed by those tiny fingers before being rejected. After I put her to bed, I rounded out this healthy meal with two chocolate chip cookies and – for some strange reason – a side-dish portion of broccoli with cheese sauce that I found in the freezer.

Gross.

But I did this to myself, and have no one else to blame. Realizing I felt too disgusting to lay down last night, I went rummaging for something in the medicine cabinet to make me feel better. All I could find was Infant gas drops, and that’s exactly what I took. I took the dose indicated for “children over 2,” because, that sort of describes me, right? Needless to say, yesterday was not a high point in my life.

Also – and I’m not sure if this is because of the Infant gas drops or the fatty foods – but I had a very strange dream in which my mom paid Barry White $100,000 to perform for her, my dad and my sister in their living room while they ate ice cream in their pajamas. I don’t even think my mom likes Barry White.

This morning was a fresh start. I got up early and had a bowl of oatmeal with mixed berries. On the way in to work I had a banana, and I also brought with me an apple, an avocado, and a bag of gorgeous strawberries that my husband picked from our front yard yesterday morning. I’m expecting just as busy a workday as yesterday, so I’m hoping that having healthy (non-trigger) food with me will keep me in the safe zone.

It’s World IBD Day: CCFA Offers Four Ways to Fight

I just received this email from the CCFA, and felt it was worth sharing the entire thing.

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Today is World IBD Day!
World IBD Day, led by patient organizations representing 27 countries on four continents, will officially be celebrated today, May 19, 2010. Patient groups from the United States, Canada, Australia, 23 European nations, and Brazil are working to draw awareness to Crohn’s disease and ulcerative colitis. As part of World IBD Day here in the United States, we’re also celebrating our eighth annual “IBD Day on the Hill,” where patient advocates visit Congress to discuss support of important IBD legislation. Here are some fast, easy steps you can take to support World IBD Day:
Make your voice heard in Congress. If you haven’t already, write your local legislator and urge them to support the “IBD Research and Awareness Act.” Research funded by this Act will help not only people with IBD in the U.S., but also worldwide.
Tweet your support! Follow @worldibdday on Twitter, and Tweet about it, too — don’t forget to include #worldibdday in your message!
Change your Facebook profile picture — find out how at CCFA’s Facebook application!
Think globally, act locally: Get involved with your local CCFA chapter. A great way to start would be to participate in your town’s Take Steps walk!
Thank you for your support — today and every day — of the five million people across the globe who struggle with IBD.

The Doctor/Patient Relationship

A lovely and sad essay was published in the New York Times on Monday, and it sparked some thoughts for me about how we interact with our doctors. For someone with Crohn’s or any other medical condition, the doctor is a critical part of the process and can make things easier or harder. So I’ve found myself thinking quite often, “is he thinking about me?” I wonder whether my doctors just dash off a quick diagnosis and prescription when I’m there, and don’t think of it again until my next visit when I’m physically there again. In his face. Needing treatment. I wonder if, like I do with my own job, my doctor’s mind wanders while he’s at home on the weekend, thinking about my case and how to make it better.

Dr. Ofri’s story is of course an extreme situation, but it really helps humanize doctors. It’s bedside manner, I guess, but it’s beyond that – it’s caring. Does this doctor care if I get better or not? Does this doctor remember my name, or does he/she have to read it off my chart each and every time we meet?

I’ve said before how much I like my own doctor, who I call Dr. D here on my blog. When I go to his office he’s always happy to see me, and that’s nice and all, but here’s the big deal: when I ran into him on the street a few months ago, he stopped, asked me how my daughter is, asked me how the Remicade is going, and when I told him about being unsuccessful in getting him on the phone the week before, he gave me his cell phone number for the future. 

Dr. D genuinely cares. And every single person deserves to have that, because I think it’s that caring nature that helps him become a better doctor, which means better results for me. It makes him more attentive, and in turn helps me to open up more about my symptoms or issues. It makes him more open to potential treatments, and it makes me feel more like I’m part of a team working toward a goal, rather than a guinea pig.