Remicade

So last summer my crohn's was starting to act up again, and I was tired all the time. So we did some testing, and found active disease. That meant that my imuran and pentasa just weren't enough. It was time to bring out the big guns.

In order to get coverage for this new medication, my GI doc and my dad's insurance company had to liaise. It involved a couple of phone calls and emails, but overall pretty painless. I had to get a TB skin test, which came out positive...like I thought it would. Then, they set me up with a remicade nurse to help me make my first appointment.

I ended up choosing a clinic near my university, for convenience's sake. At each appointment they started by taking my blood pressure, temperature, asking about my weight and if I had any recent illnesses or infections. It's not a good idea to take a powerful immunosuppressant when you're already sick.

Then, the iv went in, and the infusion started. It was actually pretty boring. It took about 3 hours each time for the medication to get into my system. So I usually brought a book, and a sweater because I found it chilly. They set me up with a comfy chair and a pillow, and there were some tvs as well.

My first infusion went fine (week 0). No crazy allergic reactions or alarming symptoms. They like to keep you for 30 min after, just in case. And the second went well (week 2) but I felt a slight headache develop in the middle of the infusion. After the third infusion (week 6), I was in blinding pain. I couldn't even move my head. I almost threw up. And in the following weeks I suffered from really awful migraines. Anywhere from 4-6 a week. It was debilitating. I missed way more class for migraines than I ever did for crohn's (disregarding my 6 weeks of hospitalization).

So clearly remicade was not the drug for me, even though my bloodwork was looking good. Luckily my GI trusted me enough to take me off asap. I didn't even make it to the "maintenance stage" of remicade, regular infusions every 8 weeks.

Until next time,

Laura

IBDamned

IBD: Inflammatory Bowel Disease (aka Crohn's and Ulcerative Colitis)

ALSO

I'll be damned: exclamation/idiom

I feel like I need to reconnect to this blog again. So I'll start with a linguistic reflection. And I'll admit, I googled the meaning of this phrase for some inspiration. At my speech clinic, our main client base are children and young adults. So we do a lot of work with literal/figurative meanings and idioms with our higher functioning kids. Let's all say hello to my inner language nerd.

When I first chose this name, I was thinking more along the lines of an exclamation or condemnation: "damn you Crohn's disease" for what you've done to my body, and my life. I was upset, and angry about my diagnosis. I really needed somewhere to vent, because I have this communication issue, not wanting to burden people with my issues.

But after some reflection, I think this blog name suits me even better. Because it can also stand for a refusal: "I'll be damned if I let this disease stop me!"

It can also stand in as an exclamation of surprise, "Well, I'll be damned!". And this disease was certainly a surprise. Maybe one I should have expected, seeing as how I had a couple years of debilitating abdominal pain. But I don't think anyone can really prepare for the baggage that comes along with having a chronic illness.

Until next time, Laura

The Wheel of Time

"The wheel of time turns, and Ages come and pass, leaving memories that become legend. Legend fades to myth, and even myth is long forgotten when the age that gave it birth comes again." - Robert Jordan

Maybe this quote is a bit overdramatic, but it has been two years since I last posted. Two long years, full of ups and downs and surprises. I'll give you a quick overview here, and then I'll take off with regular posts.

Ups
- graduated from university
- admitted to a grad program in speech pathology (literally, a dream come true)
- new boyfriend
- fabulous summer job (at the speech clinic where I volunteered for years)
- an amazing, supportive group of lady friends
- crohn's in remission!

Downs
- broke up with said new boyfriend (we dated for almost 1.5 years)
- moved home for the summer
- commuting to the fabulous summer job (40 min bus ride/train trip x2 per day)
- a stressful summer job (very high expectations, everything must be done in a specific way)
- went through 2 medications and some awful side effects to get into remission (remicade, then humira, now migraines)

But just to give a spot of good news at the end, like a sandwich, I have so much to look forward to now. Moving to a new city, new apartment, new program and new experiences. It's the change of scenery and the chance for independence that I've been waiting for. I am literally counting down the days until September 4th - my first day of classes!

Will give you lots more updates soon!

Laura