Troubled Sleep

I'm having trouble sleeping tonight. There is a sharp pain in my right knee that's radiating up my leg into my thigh. I wore some new shoes today, those minimal sneakers. (Not the toe shoes! I'll try not to judge you if you wear them.) I walked a lot and carried some heavy things up and down many stairs. I also have pain in my shoulders, though it's the kind that only hurts if I'm using those muscles. This leg pain is there no matter which position I choose.  I just took two Tylenol. We'll see what happens.

This pain is familiar. It's been with me intermittently for most of my life. I remember lying in bed and trying to sleep as a small child, but the pain radiating up my leg wouldn't let me. The doctor said it was growing pains. I stopped growing almost 20 years ago.

For breakfast this morning, I had a boiled egg and tortilla with coffee. It wasn't too bad. I only had to go twice before I left. I want to give up the coffee but it's really all I have left. Is it so bad that I have one cup of coffee every morning? I skipped lunch because I didn't want to push my luck. For dinner, I finally cooked the dried black beans I've had in the cupboard for over a year. I think I was testing the waters. I had a small bowl and two ribs that I cooked in with the beans along with some homemade, baked corn tortilla chips. Aside from my normal post-meal bloat, it went pretty well! I guess the Humira is working. 

I handed in my final requirements today and received my diploma in return. I officially have a master's degree. I'm a photographer. Officially. 

Last night I had crazy, unsettling dreams. Nothing terrifying, just filled with stress and anxiety. I might be trying to avoid a repeat.

The family that lives above us is running their air conditioner even though there is a nice, cool breeze blowing in over the water. The condensation is steadily dripping onto our air conditioner below with a loud thwack, thwack, thwack. I'm never going to sleep.

Stream of Consciousness

I spend every day obsessing over what I'm eating or drinking and when.  I have to find a balance between a headache and a stomachache.  Eat something in the morning, but not enough that I get sick at school or on the way there.  Then eat a little between classes and drink some water, but not enough to upset my stomach.  I'm dehydrated.  My head hurts.  I'm whining again.  Too much.

When I come home late at night, I binge.  I'm so hungry.  I know I will be in the bathroom several times, as long as I'm awake.  I can't eat vegetables or the pain will be horrible, so I eat starchy, salty things.  Crap void of nutrition which will only make me feel worse in the long run.  But at least the hunger is gone now.

A handful of vitamins and a bunch of water, which I choke down because I know there is nausea to follow.  I work late into the night because I know I will have to pay in the morning.

I sleep.  I wake up.  I go to the bathroom.  I go again.  Time to start obsessing.  I have to if I want to keep this up.  I think I'm doing a good job hiding it.  I'm always either hungry or in pain or tired because constantly fighting hunger or pain is just so damn exhausting.  It takes me longer to learn things because  my focus on my work is always secondary to what my body won't let me ignore.  I can't stop obsessing because, if I do, I will likely shit myself in public, which would be the worst outcome.  I've worked so hard to avoid it.  So far, my only victory.  Well, that and I haven't missed a single class or extra activity the school has scheduled for us.  That's something, right?  

I don't talk about it much, at least I don't think I do.  The person who matters most to me thinks I'm whiny and dramatic, possibly a hypochondriac.  I don't want anyone at school to know, I need to work in a couple of months and I don't want to be the sick person no one wants to hire.  I was quiet for a while, then I decided to feed off my illness because it feels like all I have right now, make it part of my work.  I immediately regretted making it a part of the conversation.

My mind is weak with anxiety.  I'm constantly anxious, cripplingly anxious.  I second guess every decision I make.  I'm not the same person at all as my well self.  I'm a total mess.  I have no confidence, I hate the way I look.  I scrutinize everything I say and do.  I'm so nervous about leaving the apartment that I do crazy, crazy things before I leave.  I make sure I've turned off the stove, even if I haven't used it since the night before.  Is the fridge closed?  The window locked?

I try so hard not to talk about it to my husband because I know it's boring and it gets old.  When I have to explain that I don't want a salad for dinner because it will make me too sick, I scream it at him.  Angry because he made me whine about it, prove I am a whiny person.  Then I hate myself for being weak, sick, angry, for taking it out on him.  I want to have a salad for dinner because my body craves the raw vegetables.  That's all I eat when I'm healthy.  That's all I want right now.  But, in the end, it would be a bad decision.

When I do speak about my illness, there is no shortage of advice.  "Eat rice, it will bind you up.  Take Vitamin D.  Get some rest.  You just need some exercise."  I can't explain to someone that my immune system is tearing up my digestive system.  That I don't have a bout of diarrhea, I have inflammation and ulcers in my intestines that will not allow my body to properly digest food.  Toast and bananas are not going to be easier on my stomach.  If I take a day off, I will not be able to catch up on my school work.  You can't believe I have that much school work?  Well I don't know what to tell you.  There's no way food can enter and exit my body in less than two hours?  If you say so.  They can't understand.  I wouldn't either if I didn't live this every day.    

I'm angry with myself because I haven't done enough work, my apartment is filthy, I fell because I haven't replaced the boots that have no tread left, I'm taking the wrong supplements because I haven't shopped for the right ones yet, I'm out of shape, I'm not making any money, I haven't spoken to my family enough this week, there is no food in the fridge, I'm not drinking enough water or eating the right things.  I don't even know where to start this to-do list with another, overwhelming to-do list of assignments/preparing to start a business is already on the page.  A few hours of shopping could wipe me out for the day and I won't have the energy left to finish what I need to do.  I don't look sick, I can't possibly be that weak... 

I've kept all of this up, every day, for months.   

I could just get back on Humira, but I'm getting older.  My window for having children is closing and I would rather not risk the medication.  In a few more months, I will be finished with school and, that's it, I will have no more excuses.  But how can I do this AND raise children?  I'm afraid that I can't.  I'm afraid that I will let myself, my husband and, worst of all, my children down.   

I'm so afraid of everything right now.   

Update

I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.

The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.

I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.

I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.

Remission My Butt, Literally

So I went out for dinner in my neighborhood last night. I played it safe and got the broiled snapper with rice pilaf. There was a very light lemon sauce on the fish which was delicious. I was really happy with my choice but my stomach wasn't.

I just didn't imagine remission would be like this. I thought remission would be like heaven or something.

Eggs - An Update

After my egg on Sunday I did have some stomach upset. It took several hours but it was definitely not normal. I think I have an egg problem.

What's the next step?

Eggs?

On weekends we like to sleep late and have a good breakfast. I always had more stomach issues on the weekends but I assumed for a long time that it was because of the volume of my breakfast as my weekday breakfast is much lighter.

I generally would have some egg whites and turkey bacon which, to a normal person, might seem like a light breakfast. For a Crohnie, it's playing with fire. Generally, I paid for these breakfasts as the stomach upset would start immediately after breakfast and continue throughout the day. Now that I'm feeling much better, I'm beginning to wonder if it's the eggs.

I'm still eating light most of the time and I'm not completely symptom free but the symptoms I'm having are far fewer and farther between than they have been for the past two years.

I was just thinking back to last weekend. I took a road trip to attend a wedding. Spending a weekend a few hours away from home and my comfortable food would have been incredibly anxiety inducing a few months ago. Now? Not as much. I was still a bit nervous and my stomach was uncomfortably distended for most of the trip but I didn't have to run to the bathroom at all - except once, soon after breakfast including egg whites!

I've decided to test my theory this morning. I don't have anywhere to go so... I finished an egg on a slice of gluten free toast with some cheddar at 10:00. I'll keep you updated.

My Favorite Gluten Free Replacement Foods

There are many, many gluten free products out there. Most of these products are meant to replace glutenous foods. There are gluten free breads, cakes, cookies and pretzels. You can buy gluten free pie crust, gluten free pizza crust and even gluten free bread sticks. Sadly, most of these products suck.

The secret of gluten free eating, for me, is to eat foods which are naturally gluten free. Meat, vegetables, potatoes and rice always taste good. Corn tortillas have become a staple of my diet. There is nothing better than a steaming bowl of grits on a cold day.

There are exceptions to my gluten free rule, however.

-Almost every day I have crackers and hummus for lunch. My cracker of choice: Kame Rice Crackers. I don't love the wasabi or soy flavors but the original and sesame varieties cannot be beat. Kame rice crackers can be found in the cracker aisle of most grocery stores, most grocery stores in New York anyway. www.kame.com

-As far as I'm concerned, the ONLY gluten free bread worth eating is Udi's. The white bread ACTUALLY TASTES LIKE WHITE BREAD! I bought the whole grain variety this week and it is also delicious. A lot of the bread out there is incredibly heavy (think dry fruitcake) or incredibly bland. Udi's is light and bready and, at around five dollars, is relatively inexpensive as far as gluten free breads go. I don't know how they pull it off. I don't eat a lot of bread but when I do it's gotta be Udi's. Unfortunately Udi's is a bit difficult to find. So far I've found it at Whole Foods and I know Fresh Direct sells Udi's. There is a store locator on the website.

-One of my favorite gluten free menus is at Nizza on 9th Avenue in Manhattan. The pasta there is a-mazing. I found out they use Le Veneziane pastas. This is the only gluten free pasta I've eaten that even comes close to the texture of wheat pasta. It is fantastic and, I think, only has two ingredients: corn meal and water. Even gluten gluttons like this pasta. The drawback, again, is that the pasta is difficult to find and can be pricey. You can buy it on Amazon and Quattrobimbi. I found Le Veneziane at a small Italian importer near my neighborhood in Brooklyn for about $2.75 a box. So it is out there, finding it just requires some research.

Lucky for me, I never was a carb lover. I don't care too much for cake or cookies and I never ate a lot of bread. This probably made the gluten free thing easier for me.