Finding the Humor In It...

So I told my husband "Babe, we need a funny line for our team t-shirts for the Take Steps-Walk for Crohn's and Colitis."

And he came up with a bunch! He's so good to me! I picked the two that made me laugh the hardest, drew an intestine with a black sharpie marker and ...for your enjoyment, here are the final products. The front and back of our team t-shirts!

Some people would think walking around in a t-shirt showcasing a small bowel may be odd...not my family!

For all you IBD peeps out there- here is another story to make you laugh. Last Friday I had my second colonoscopy in two months. I remember nothing about the first one except going in. I was totally out of it! When I woke up I had a full blown convo with my Doc, yet I couldn't recall a thing later on- good thing my hubby was there to talk to the doctor so he could dictate to me what was discussed!

The same thing happened last week... but it gets better! I went in at 6:30AM, was out of the colonoscopy by 8:00AM, home asleep by 8:30AM. Since my hubby works until 4:00AM- he also went to sleep.

Then I wake up an hour later in a FULL BLOWN PANIC! "Honey, we missed the colonoscopy! What are we going to do?!? Wake up! Wake up! Oh my god!" Tears in my eyes. Had I done the crappy prep the night before all for nothing?!? It took a good five minutes for him to talk me down and convince me we had already gone to the procedure and come home....awesome.

CCFA Take Steps

Support Team Semi-Colon!!
June 6th, 2009
Boston Commons

Make a Donation Today!

My family is taking their spirit and love to Boston! On Saturday, June 6th, my family and I will be walking for the Crohn's and Colitis Foundation of America (CCFA) in their Take Steps, Be Heard campaign. We have a fundraising goal of $2500 and we are almost halfway there!

Thank you so much to our family and friends who have donated and supported us already!

Remicade, Treatment 3

Wordles: A Way to Cope

Sometimes you just need a new way to cope...and a wordle is a terrific way to express yourself. Above is my sad wordle. This is how I feel when I am inflammed and depressed- warm colors, everything all over the place! When I am in this state of mind I can only focus on the challenges of getting through the day. In the last few days, this wordle describes me...

On Friday, May 1st, I went in for my 3rd Remicade infusion. It started just fine, but 30 minutes in, it got interesting! It was then I began to fully appreciate the slow drip. Because my mom had an allergic reaction to Remicade in the past, I have always been a little weary. So, for the first 4 infusions I wanted to have someone with me. I am grateful my sister-in-law Vicki came with me this time around.

So there we are chatting about Grey's Anatomy and Private Practice (by the way, unbelieveable Private Practice finale!!!!) and my chest begins to tighten, it's getting more difficult to breathe and I can feel intense heat rising...I felt like my body was a thermometer. That is when we called in Laryl, RNP, and she immediately stopped the drip and made me lie down. Apparently I looked like a talking red beet. Now I know what a hot flash feels like and I do not envy my mom and mom's in law!

After waiting 30 more minutes and flushing my system with saline, we started that Remicade back up. Try try try again! Vicki taught me the card game "Spit" and despite what my husband says, she does not cheat:) So there we are having a lovely time, playing one hand spit. That's when it happens- I get the ITCHIEST palms I have ever had! If Vicki would have left me alone I probably would have rubbed my hands raw. Come back Laryl! And then the bottoms of my feet began to itch...red, raw, and I could not stop scratchin'...

The bottom line- after painful skin, excrutiating joint pain, hot flashes and intensely itchy hands and feet- my docs put a stop to my Remicade treatments. Oh Dear. Where are my sweatpants?

On to Humira

Apparently, my body can not tolerate the mouse protein found in Remicade. Pretty depressing, I had high hopes for Remicade. Now, we have a new plan and we are going to try another biologic medication called Humira. This drug is also a TNF blocker, but it is administered by giving yourself an injection under the skin.

My sanity is being tested. I really just want something to work! But I am going to breathe and focus on what my happy wordle looks like instead. The cool colors, the organization. I am lucky in so many other ways. This disease will not rule.

A big thank you to my husband- for sitting through the first two infusions and keeping me laughing at all times- and to both Vicki and Laryl- for getting me through these allergic reactions!

To create your own Wordle- check out http://www.wordle.net/
Hope you have a great day!