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.

I feel great! (Well, except for a couple of things.)

Today I had my first blood test in three months. It was just a regular old checkin-up-on-the-Humira test. My nurse told me I have a completely new face which, I think, was a compliment. The 6mp bloat is gone and I have some color. I know I look better. I feel better. My life is better. I just still don't feel great.

My stomach is almost 100% better. I rarely have any trouble digesting anything I eat - even the stuff I shouldn't be eating. I do, however, still have Crohn's belly after every meal. If I swallow anything, no matter how big or small, it results in a food baby. I still have some trouble if I'm in an uncomfortable situation or if I'm nervous - BUT - compared to last year at this time, I'm a new person. So, when I call for my results on Monday, do I complain about this stuff? Should I just shut up? I can eat now! I can leave my house after I eat! I can make it to work without getting off the train and running to find the nearest facilities! Do I have the right to complain about some minor (if embarrassing) discomfort?

Then there's the pain. I do still have some minor pain when I, uh, youknow. But I have other, more disruptive pain. There's a pain at the base of my neck, on my back, where my neck meets my shoulder. It's recurring. It's horrible. It's much worse when I'm stressed out.

And my legs. They still hurt. It's more of a stiffness in the morning. They feel strained when I go up and down stairs. By the end of the day it's a different kind of pain. It's an achy, crampy, swollen type of pain that makes me just want to sit with my feet up or lie down. I've also notice many, many visible blood vessels on my legs which weren't there just a few months ago.

Then there are the headaches. I still have them. Often. And they're sometimes drug-resistant and always incredibly disruptive. And they make me so tired. Do I tell my doctor?

I've told him a million times about the headaches but he seems to think it's from the Humira so it's either headaches or Crohn's.

The body aches? He will send me straight back to the Rheumatologist who will tell me it's either Arthritis or Fibromyalgia and I can go to physical therapy. But I don't want to go to physical therapy. I can't afford physical therapy nor do I have the spare time. I want to know what's wrong with me! I want to know what my options are!

How do I voice this to my doctor in a way that doesn't make me feel like a half-crazy, whiney baby?

Suggestions? Advice?

Busy

This week I am pushing through the headaches and bloat and nothing fits around my waist. I've got lots to do - some fun and some not so much. I'm feeling lately like I've wasted too much time being sick and I want that to change.

So I'll be busy straight through the weekend, whether my guts like it or not.

That Time

Sorry guys, but I am having some serious IBDPMS.

I don't know if it's the Crohn's or a hormonal imbalance or just me but this is just unbearable. Each month I temporarily gain about five million pounds. It's all around the middle. I don't know what it is, where it comes from or where it eventually goes but I'm over it.

So I measured and I gain about four inches around my waist the week before my period. It's awful, painful, uncomfortable and I don't know what it is. Water weight? Bloat? Gas? Whatever it is, I don't know how to get rid of it and I don't know how to live with it. My clothes are too tight, I feel like I'm going to pop and apparently people think I'm pregnant. I also have trouble dealing with people looking at me or talking to me. I wish I could put on a muumuu and lock myself in a room for a week and come out when it's over.

Once the cramps start, look out. It's hard to tell the difference between menstrual cramps and Crohn's cramps so it's basically three or four days of constant paranoia. Do I need a bathroom or a hot water bottle? Curses.

Ok, I'm finished whining...until next month.

How Humiliating

Someone asked me today if I'm expecting. Ouch.

First of all - never, EVER ask a woman if she is expecting. If you are not 100% sure - DO NOT MENTION IT!

Secondly - the fact that I was wearing about three layers which included a huge cardigan and an equally huge scarf that was sticking out of the cardigan at my stomach does not make it any better.

And three - I couldn't say it's just a Crohn's Belly. This was the first time I ever spoke to this person!

In my defense, I had just eaten my lunch-snack and my Crohn's Belly was in full effect. I know she didn't do it on purpose because her face turned bright red after she said it and she clearly regretted saying anything at all. But c'mon. Nothing will ruin a girl's day faster.