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

Apology

I know it's been ages since I last posted, and I don't really have an excuse. Except that I've been exhausted.

My typical summer week looks like this:

Monday - volunteer at the psycholinguistics lab, grocery shopping, sign language class
Tuesday - work, pilates
Wednesday - volunteer at the speech and language class, yoga (sometimes clubbing)
Thursday - work, swim
Friday - volunteer at the speech pathologist's

I am drained. Even though I can usually sleep in a bit on my work days I just don't have any energy.

I had bloodwork done last week (my every 3 month check-in) and I got the results today. My B12 is low . . . which is funny because I take a B-Complex supplement every day. Maybe it's a malabsorption issue? Maybe it's something ridiculously scary and sinister going on in my body.

Me and my mom brainstormed a quick plan - start taking the 1000mcg B12 vitamins that she accidentally bought (instead of 100mcg) wait a week or two, get bloodwork done again and see my doctor. If my B12 levels don't go up again, we'll probably consider shots.

Now since I'm about to fall asleep at my computer right now, I'm going to call it a night. And try to find a spot in my busy week for blogging!

Rest, Relax and Eat Right

All things I didn't do this past weekend. I decided to push myself a little bit and volunteer as staff for a 4-day 3-night leadership conference for high school kids. Now this may sound fairly innocuous, but this is where you are wrong.

The day begins at 7:30 for the delegates when we wake them up. That means that staff are awake as early as 5:00 making pancakes, eggs and bacon for breakfast in the residence kitchens. We are lucky to get three hours of sleep because by the time the delegates get into bed and the staff meeting finishes up it's usually around 3:00am.

The days are absolutely grueling with constant cheering, dancing running all over the place with a little bit of down time for motivational speakers and sessions on leadership.

And the food . . . delegates eat first always, so if there isn't enough the staff don't eat. Or we eat things like burgers and chicken wings and pizza, pizza, pizza. Candy and cake all hours of the day, trying to replace sleep with food.

I know this sounds really really awful, but I absolutely LOVED IT!! My body was up to the demands and my Crohn's didn't get in the way much at all. It definitely let me know near the end that it wasn't all that happy, but that didn't stop me from having an AMAZING time.

I guess it really proved to me that I am okay, I can still do the things I love. I'm not an invalid and I am stronger than I think I am. Now I'm going to collapse into bed and try to catch up on my sleep a little more.

Rent

"You don't want baggage
Without lifetime guarantees
You don't want to watch me die"

My friend was able to get last minute tickets to the final performance of Rent in our city on saturday. I didn't have anything else going on that night, so I said yes without a thought. I don't want to get all melodramatic here, but seeing the show:

a. made me cry
b. brought up some memories of earlier this year

A. was no surprise. I'm a crier. I cry at movies, books, tv shows, sad songs...pretty much anything with a plot. In the past, seeing the movie and the broadway show has brought tears to my eyes, so I was expecting that.

I wasn't expecting the sight of Angel in a hospital gown (similar to my old ones) and some of the lines to really hit me where it hurts. Watching the characters struggle with AIDS and still be there for each other, even when really sick or dying made me sadangrymaddepressedlonely. Why couldn't I have that too?

My illness was the catalyst for my break-up in November, and it was hard watching what I didn't have. I know Crohn's disease isn't fatal, but if people with AIDS can find love, and not be ashamed of their disease why can't I.

This musical hit a couple of nerves, and I feel like I understood it in a completely new way. Rent did amazing things for AIDS awareness, however I doubt Crohn's will ever reach that level of mainstream pop-culture.

The Hangover

Well, there is definitely one thing my intestines don't appreciate. And they always make sure to let me know the next day. Crohn's + Alcohol = not a happy tummy.

But, this is my no obligations week (after exams, before the summer job starts) so I'm not gonna let anything stop me from having an amazing time. I know you don't need alcohol to have fun, but it definitely makes things much more enjoyable.

Off to party now, this is night three of the streak. Maybe my intestines just need practise, and time to get used to the copious amount of alcohol they're dealing with.

What can I say, I'm in University!!