Day 88

My days are often a blur.

I got up early this morning to load equipment into my car. I then sat in so much traffic that I was late for work. Before I got to my desk I had three messages and at least six emails waiting for me. I took on an extra project at work so I spent the first hour catching up on the usual stuff before spending a couple of hours taking head shots for my company. I spent lunch catching up with a friend who had to see her grandfather off to hospice over the weekend, then ate at my desk while I tried again to catch up on my work, give my sister beltway directions around DC from my desk in NY and find a replacement flight for my mother whose flight back from Florida was cancelled. I spent the rest of the afternoon catching up on work and editing photos then finished the day with a call from my boss (ten minutes before I was supposed to leave) who had a few more things for me to work on. I took a short walk with a friend before heading off to a lecture, then met my husband at the subway station where we picked up tacos from a truck to eat on the train ride home.

I long for moments of silence or a few minutes to read something for pleasure or catch up on the news. My father, however, spends his days waiting for something to happen, for someone to stop by, for the phone to ring. He recently had a stroke and was forced to retire. He can't drive himself anywhere or reload ammunition (formerly his favorite hobby). Phone calls from his children are sometimes the highlight of his day so I do my best to call him at least once each day. I called him, today, on my walk from the lecture to the subway. It was a short walk, but it was the only time I had. He was disappointed that I only had a minute and couldn't talk longer. He told me I always call when I only have a minute.

If only I could swap some of my crazy for some of his calm. The way this whole life thing can pan out is so cruel.

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.

Crohn's Guilt

I have Crohn's Guilt.

I am in the midst of a "flare" that began a year and half ago. I've been through lots of drugs and lots of symptoms and it's all been awful but the worst side effect, by far, is the guilt.

My apartment is filthy, I have a untouched pile of work on my desk in the office and a million projects at home that I want to finish. My friends, family and boyfriend all want to go places and do things and eat food. Me? I'm in bed battling (choose one) a migraine, stabbing/burning/crampy abdominal pain, nausea and/or heartburn from hell. If you can't find me in bed, I'll be in the bathroom.

I know there are a million things that need to be done but I can barely stand up much less take the train to the office. Is there anything I can do from home?

Nevermind, I'm feeling fine today. Let's go somewhere. No, I can't go to a restaurant. I'll never make it home alive. Ok ok, fine. Let's go to dinner. No, I'll just have a Coke. It's fine, don't worry about me. I'm not that hungry anyway. Really, don't feel bad, I'm used to it. I know you're not used to it but I will be fine. Just let me have one bite of yours.

Oh man, we need to get off at the next exit/subway stop/gas station. Hurry! NO, get off this exit! I need to stop NOW! I'm not going to make it.

I know we were supposed to go to that movie tonight but I really can't. I'm feeling awful. Can we just go home? I'm sorry.

I'm sorry, we can't go for breakfast before we do laundry/lunch before we go grocery shopping/dinner before the movie. I won't make it.

I'm so sorry I made you pull over/bailed on you/yelled at you/made us late for the play. I'm really sorry. Sorry. I'm sorry.

Since I can't read minds (yet). I never know if the people in my life are disappointed, angry or if they actually do understand. I still can't believe this is my life. This is so hard...