Pain

I think that the Remicade is doing something to help. Up until a week ago, I was feeling much better. Not much pain, or diarrhea, or cramping. But, lately it has felt like the switch was flipped. I have been living in hot showers and bed. I stayed in bed and slept until 4 (!) today because I was so achy I couldn't bear the thought of moving around.

Remicade is coming on Thursday. I'm so relieved. I really, really hope that it is helping.

The Itch

Ever since I had the setons installed in November, I have become well-acquainted with The Itch. I was very accustomed to dealing with all kinds of pain, but The Itch is all-consuming, as nothing takes care of it other than a warm shower.

I'm not sure what causes The Itch. No, that's not true. I have a theory that I will discuss with Dr. L on Tuesday. It's really gross, so you don't want to hear it. But, we need a better plan for dealing with it. Obviously, I can't spend the rest of my life in the shower, regardless of how appealing that would be.

Calmoseptine ointment has been my lifesaver. It has menthol in it, and is a moisture barrier, so that helps tremendously. However, it doesn't take care of all of the itching and certainly doesn't stop it once The Itch really starts. Only a shower does that.

I completely understand how itching can be used as an extreme form of torture. I have made H promise that if I am ever in a coma, the nurses will keep me loaded up with Calmoseptine so that I don't feel any itching. I am sure that it would drive me insane even if I was unconscious.

Forgiveness

I need to learn how to take care of myself.

I have always hated my body. Even when I was in High School and wore a size 8 (at 5'8"!), I was convinced that I was fat and refused to wear shorts. Exercise has always been a dirty word. I have always treated my body like the enemy, especially when I got so sick and my body went into full rebellion.

Because I don't understand having a healthy respect for one's body, I tend to regard people that do take care of themselves with mixed awe and suspicion. Are they so self-absorbed that they spend so much time worshiping their bodies? Do they neglect their families so that they can go to the gym? Do they make martyrs of themselves with their restrictive diets? That couldn't be farther from the truth. People that exercise and eat carefully understand what I do not.

This is the only body that we have. It was given to us for our use while we're here. Our lives will be much easier if we take care of it. Taking care means exercise and eating well and getting proper amounts of rest. It's that simple. And, if that means that we are self-absorbed, so be it. Maybe we need to be. Maybe I need to be.

So, the day of reckoning has come. I am going to enroll in Weight Watchers Online again. I will start moving... not sure what will work best yet, but I'll figure it out. And, I am going to forgive myself. I'm a good person trapped in a bad body that I have neglected and abused and beaten up to the point that it is starting to push back. I will look at everything that I eat in terms of "how is that good for me?" rather than "I shouldn't be eating that." And I will get better. I have to. This is the gift that I was given, and my approach for the last 40 years isn't working. Obviously.

Guilt doesn't work. Neither does hatred, or anger, or loathing, or disgust. It's time for a little respect and forgiveness. And patience. Lots and lots of patience.

Coming Around

I got through the entire day without taking Tylenol, falling down, or needing a nap. Progress is being made. I was very nearly a disaster at the store, though, as it took me forever to do anything and I tripped over two different boxes. The scariest part of the almost-tripping is that my heart rate skyrocketed. I was truly terrified of falling. Of breaking wine bottles, not so much.

Soooooo...

I went back to bed. I'm in bed now, with the ceiling fan on and the windows open. All three cats are in the room with me. I just need to sleep for a little while longer.

I just talked to H a little while ago and he reiterated my need to call the doctor. Yeah, I get it. But, I also believe that there won't really be anything that the doctor could do.

H also asked how I manage to work. I don't have much of a choice there. I save all of my strength and go in and do whatever needs to be done. But, that's it for the energy. The work is physically demanding, and I love it, but it taps me out completely.

So I sleep. For a little while, anyway.

Feeling Lousy

I can't seem to shake this thing. I was tired yesterday afternoon, so I lay down at 6. I didn't wake up again until 10:30 this morning. The kicker is that I didn't take any meds, or drink any alcohol, to facilitate it. I just slept.

H is very irritated with me. Perhaps he's annoyed because he wants to be able to sleep like that, but he crashes on weekends when I'm working. I did promise to make dinner last night but was sleeping, so he warmed up a frozen pizza. He was also very short with me this morning. I don't get it.

I also still feel very, very lousy. When will this end?

Still

I'm sick AGAIN. The bad cold is back. This is getting ridiculous.

Killer Fatigue Redux

I went to bed at 8 last night. Well, I didn't really mean to go to bed, as I was still fully dressed and thought that we would go to the grocery store when H got home.

I woke up at 9:30 this morning still in my work clothes and still exhausted. I would have stayed asleep had E not called. I'm going back to bed now. I can still get in a full day of decorating and baking.

Killer Fatigue

I'm Wiped Out. There's no other way to describe it. I've been tired anyway, but I spent the day at Job #1 lugging around full cases of wine and redoing displays. If I weren't so horribly out of shape, it still would have been a very busy day.

I'm not sure if both jobs are kicking my butt because I'm having a bit of a flare, or because it's Christmas, or because I've been working 60-hour weeks, or because I have been sleeping but not very soundly, or a combination of all of these factors.

The flare is a bit troublesome because I am getting a second fistula. It's small, but it's in the same general area as the original one. The swelling has gone down a little, but it's extremely painful. That begs the question, of course, of what to do about this. I need to get back into Dr. L to see what the next step is. I'm pretty sure that surgery isn't an option because of the location. My wrists and hands in particular have been awful lately.

I have been losing weight, but it hasn't been dropping off as quickly as I'd like. That would make the flare worth it.

Daily Agenda

1. Wake up grudgingly. Curse creatively in various languages.
   
2. Shower and dress in something other than pajamas.
3. Grab something for lunch and/or dinner before running out the door.
4. Wear self out running around at work.
   
5. Focus on the dark drive home.
6. Wash, brush. Have emotional reunion with pajamas.
7. Crash.
8. Repeat.
   

The Crud

I have had various stages of The Crud for the last two weeks. I'm not even sure if it's the same Crud, but it feels like it. It's not the flu, because that's upper respiratory, and this Crud is striking in different areas. I realize that I have no immune system to speak of, but I have been eating and sleeping better. I'm certainly getting a lot of exercise.

Am I going to feel like this all winter? Oh, please, no. I should just be grateful that I have a FULL DAY OFF today and get lots of sleep.

Both cats have been circling me like I'm about to die imminently and they want to scavenge my carcass.

What is Right?

I am adrift.

On some level, I should enjoy my lack of responsibility. I should also enjoy the exercise that I'm getting and the love that I feel from my co-workers. But, I can't do this forever. Not just because of the money, of course, but because I'm hard wired to accept more responsibility than this. I need to be in charge of something, even if it's just refilling the minis in the display case. Paying bills doesn't count.

The good thing is, that with the exception of the excruciating sinus headache today that kept me home from Job #2, I have been feeling much better over all. Tired, yes, but able to work and work and work. I think that I need to carve out time off every week so that I can get some solid rest.

I also chatted with R tonight about the half marathon next spring. He thinks that I should train to walk it, mostly because of the Crohn's, and run some of it as a bonus if I can. That's a noble idea. I'm getting to the point where I think that I could do that. And, I'm losing weight even though I'm not really trying. That always helps.

Observations on an Honest Day's Work

The last two days have been stressful at both jobs. Some basic reasons why:

1. Many Mommies tend to either forget or ignore that their kids need breaks, food, and naps. If the kid is screaming, it's usually for a reason.
   
2. Some people look down on those that work retail. Do they think that we're uneducated or stupid or both?
   
3. I need to invest in some really good shoes.
   
4. Tylenol works best when you take it when you first need it, not when the pain gets intense.
   
5. Always bring an extra bottle of water.
   
6. Avoid the food court.
   

I am really enjoying both jobs. Granted, I would like to make a little more money, but this is so good for me. Not only am I getting a ton of exercise, I feel NEEDED. It has been a long time since I've felt needed. There is so much satisfaction in knocking out a lengthy to-do list and then going beyond that. And, at both jobs, I can look back on the day and know that I accomplished something tangible.

H says that he's proud of how hard I'm working and how well I'm holding up. I just wish that I wasn't so bloody tired all of the time.

Homesick

I want to go to Chicago.

I want to go to the Obama rally in Grant Park with T on Tuesday night.

I want to wake up to the smell of coffee at my Mom's.

I want to smell the crisp autumn air, complete with smoke from a fireplace.

I want to get on an airplane.

I want an Italian Beef sandwich.

I want.

Ugggggghhhhhh

I caught the cold. H had it over the weekend, and people at Job #2 have had it on and off for the last week or so. I actually called in sick to Job #2 for the first time tonight. My nose won't stop running, all of my joints ache, my throat is burning, and I have a slight temperature. I worked at Job #1 until about 1 today, and have slept until now.

H feels terrible that I got it from him, but that's what happens when you are married.

Long Week... And It's Not Over Yet!

We had sales meetings yesterday and today. Those damn things wear me out. Although, I must grudgingly admit that it was good for me to meet some people that I hadn't had a chance to meet in person yet. I worked at job # 2 tonight as well.

Today would have been much better had we not gone to a horrendous Southern "smorgasbord" for lunch. I should have just eaten plain lettuce, but I'd bet that even would have been disastrous. I haven't been in that much pain in a while, but I wasn't the only one.

So Tired

I'm not sure what's going on, but I haven't been able to sleep solidly for the last few nights. Of course, by the time I want to take something it's too late. I haven't been downing caffeine like usual, and I don't think that I'm any more upset than normal. I guess that I'll need to take plenty of meds tonight and see if that works for a change.

It doesn't help that H has been thrashing around like a man on fire. Neither cat will go near him.