My happiest place...

Desperately Seeking Optimism

Date: April 1, 2013 at 7:08 am- by Ali- Comment(s): 72

Let’s get the cheesy stuff out of the way first…

From the very bottom of my diseased little heart, thank you all so much for your kind comments, your sweet thoughts and your nice Tweets. Being ill sucks, but every time I received a bit of online love, my heart swelled…just like my intestines. So truly, thank you for thinking of me and for being on Team Free Ali From Mount Sinai.

And I am free from Mount Sinai!

Being beautiful in the hospital with my friend Dragon.

Being beautiful in the hospital with my friend Dragon.

My hospital visit was short, though not at all sweet. And, unfortunately, not at all successful.

I was admitted Wednesday night around 10 PM, and despite my hesitation at getting admitted during the night shift, the night nurses were amazing. Last time I was in the hospital, I had terrible luck with the nurses on my floor. They were mean, they messed up my medicine time after time and I swear they were making me sicker.

This time around, I had delightful nurses and it made a huge difference. I’m big on bedside manner, and theirs was the tops. Do people say, “the tops” anymore? They should.

So after getting admitted, Night Nurse Karen immediately got my IV in (painless!) and started the fluid IV. This was my miracle drug. For days I had been so exhausted, dehydrated and fever-ed, and after 24 hours with the fluid IV I felt somewhat alive again. It made a huge difference.

I took in two big bags of this fluid. I would like to continue getting this "treatment" daily, please...

I took in two big bags of this fluid. I would like to continue getting this “treatment” daily, please…

Wednesday night was a bit rough: I was admitted into a shared room, and I was in the bed furthest from the bathroom. A tough thing in life is when you’re having bathroom “urgency,” and you’re hooked up to an IV, so you have to unplug it, untangle your wires and book it past your roommate — wheely IV-stand in tow — to get into the bathroom. Life is hard.

Also, my “bed” wasn’t so much a bed as it was an air mattress. I guess they use these for people with poor circulation sometimes? Is that right, Susan? So every 90 seconds the air mattress would vibrate and shift slightly, and do you know what you don’t want when you already have an unsettled stomach? Vibration and rumbling. Night Nurse Karen was like, “No probz, Ali girl, I’ll just unplug this bad boy so you can get your sleepy time on!”

Do you know what happens when you unplug your “hospital bed?”

It deflates.

So there was that.

Plus the night sweats.

Plus Night Nurse Man Who’s Name I Didn’t Catch Because I Refused To Open My Eyes To Talk To Him came in at 3 AM to take my vitals and steal more of my blood. Gotta love handing over your veins at 3 AM…

Then, at 3:30 AM, Night Nurse Karen came in and said, “A bed opened up and we need to move you into a private room because of your diarrhea.” I try to avoid using that word because it’s descriptive, but there’s just no way around it here. I got my own room because of my disease. And my urgency.

By the time I got re-settled in my new room with a real bed, I was shot, and I slept until 8:30 AM. That was amazing. Exhaustion is the best.

This is what they brought me for lunch. Completely inedible. Hospital food makes people sicker, I think.

This is what they brought me for lunch. Completely inedible. Hospital food makes people sicker, I think.

The on-call GI team came in to meet with me after I woke up and they asked all the questions that I swear should be on my chart…can’t they just read my chart? I really disliked the on-call GI head dude. He wanted me to get a billion tests, including another MRI, which I just had (and did not do well with) when I was admitted in August.

I sort of freaked out when he told me I was going to be in the hospital for 2–3 more days, and panicked further when he said he wasn’t going to give me the Remicade…which was the reason my doctor admitted me. He wanted to take his own course of action, and I wasn’t on board with that, and I was sweating, so I called Dr. Beautiful in a panic and left a really gentle 10-minute message on his secretary’s voicemail.

Guess what Dr. Delightful did instead of calling me back?

He showed up.

I just about kissed him when he walked in. What a stand-up guy.

I explained my concerns with what the other doctor said, and Dr. Amazing was like, “No, I agree with you. We don’t need to do all those tests. Let’s get you some Double Dose Remicade.”

I tried to kiss him again, but he said something about having to go to India for 10 days. Probably the lamest excuse any guy has ever given me, but fine.

So then I got Remicade x 2 and I was feeling great. Not physically, but mentally I was finally feeling like something was going to work, and I was going to leave the hospital just like last time, feeling perfect and ready to tackle the world + 26.2 miles.

UNRELATED TYLER PHOTO MEANT TO BRING YOU JOY.

UNRELATED TYLER PHOTO MEANT TO BRING YOU JOY.

The Remicade infusion was done by 3:30, but the pre-infusion Benadryl IV knocked me out so hard that I slept for two more hours before I could drag myself home.

I was happy to wake up in my own bed on Friday and was giddy at the prospect of having a body full of Remicade. I know that if it’s going to work, it’s going to work within 12–24 hours of the infusion.

But 12 hours later, I didn’t feel any better.

And 24 hours later…and now days later…my stomach is still the same.

Drinking my juice, trying to get healthy and stuff.

Drinking my juice, trying to get healthy and stuff. If you leave me home alone for weeks at a time, I will take many self portraits. I don’t really know what else to do with myself in times like these…

I don’t think the Remicade worked. And I don’t think it’s going to work.

So here we are.

This weekend was hard for me. It was the first spring-like weekend in NYC, and I was supposed to go to Rhode Island to spend Easter with Brian’s family. I wasn’t up for it, so I didn’t go.

Instead, I spent the weekend alone on the couch, feeling sorry for myself and hating everyone.

Last one, promise. At this point, I had not showered in a few days...and my hair has never looked better.

Last one, promise. At this point, I had not showered in a few days…and my hair has never looked better.

The whole time I have been sick, I haven’t thought much about working out. It’s so clear my body needs total rest, and for the most part I couldn’t even lift my head from my pillow, let alone tie my Adrenalines and get out the door. Running was hardly on my mind and I was OK with it.

But on Saturday, the world ran long while I PR’d in couching.

All weekend, I felt depressed. It’s common for people with Crohn’s disease to feel this way — or so I’ve read. You feel like you have no control over your life and you feel like you’ll never live “normally” again. It’s hard and while I’ve handled it well in the past, lately I’ve lost much of the optimism I’ve often prided myself on.

By Sunday, I picked myself up slightly. I went for a little walk…

My happiest place...

My happiest place…

…and tried to enjoy life beyond my living room.

I sat on a bench at Engineers’ Gate watching all the happy people go by on their bikes and their feet. I alternated between feeling happy to be breathing fresh air in the park and upset that I wasn’t being active myself.

I basked in the tiny victory of not having a fever all weekend — and then last night it was back up to 100.6 and I was back to sleeping in a burrito-towel wrap. The fever wasn’t sky-high, but it was elevated enough to make me feel like I took one skip forward and one sad shuffle right back.

I’m reminding myself that I’m strong. I tell myself this is all a test, and it’s one I will ultimately pass. I remind myself that last year was hard at times, too, but then I ran a 22-minute marathon PR and spent the holidays with Tiny Tyler.

Checking his Twitter feed.

Checking his Twitter feed.

My mental stability is fragile at best right now. I can go from feeling hugely positive to completely defeated in minutes. I keep reminding myself — and anyone who’s daring enough to listen — that I’m just doing my best. That’s all I can do.

I’m not sure what happens next. I kind of can’t believe that I am still sick after leaving the hospital. It was supposed to be my miracle cure…but it wasn’t. It didn’t work.

Dr. Dreamy really is away for the next 10 days, curing sick kids in India or something (he is a good human), and I’d rather not reach out to the “other guy” he said I could call if I needed anything. We’ve talked about switching over to Humira, which is a self-injection drug that tends to work for people who “no longer respond to Remicade.”

I’m juicing most of my meals and I’m hoping to make it back to the office this week for at least a few hours at a time.

I had some fun with the juicer this weekend. Turns out, I'm terrible at "combining flavors" and figuring out which fruits and vegetables taste great together.

I had some fun with the juicer this weekend. Turns out, I’m terrible at “combining flavors” and figuring out which fruits and vegetables taste great together.

I hate all the healthy people and I love anyone who wants to tell me that they, too, spent every single minute this weekend avoiding physical activity.

Love you/hate you!

But mostly love you. Promise.

Someday this will be Ali On The Run again. Today’s not that day, but I’m sure it’s coming up soon.

Comments (72)
 
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