I'm Back Here

So yesterday was the first day of my second semester of grad school.  It's been tough, I can't say I've ever worked harder in my life, but the rewards are tremendous.  I've learned and grown so much. 

The workload, however, became more than I could handle during normal waking hours.  I spent the last month of the fall semester staying up all night and sleeping for a few hours in the morning before starting all over again.  It caught up to me.  After Thanksgiving, my long, luxurious remission officially ended.  I'm sick again.  For real this time.

I met with my doctor the week school ended.  I'm going to try Pentasa for a couple of weeks to see if it helps.  With all of my holiday travels (and holiday tests of my stomach's maximum capacity), I'm not sure I've given it a fair shot yet.  I think I will wait to the end of this week to determine whether or not it's working.  I'm hoping I caught it early enough this time and I won't need anything more than a few pills.

Yesterday I held off on eating until 6:00pm, at which point I had a few rice cakes.  My stomach is far more sensitive in the mornings so I decided a light snack at dinner time followed by stuffing my face when I get home at 11pm will probably work best.  The problem is, the splitting headache I got in the middle of my late class.  The school has a single restroom for the ladies and it is directly outside of our classroom.  So you see my dilemma.  Better to starve than to have to use that bathroom for an emergency.  I'm hoping the Pentasa works.  I'm not interested in the Humira vs The Insurance Company battle right now.   

Day 106

Oh Paralyzing Nausea, I'd all but forgotten you!

Things have gotten really stressful at work. It's making me sick. I wish I didn't care so much. Why do I CARE? WHO CARES? Anyway, I felt more nauseous today than I have since my Crohn's went into remission. I just looked that post up and - holy crap - that was well over two years ago.

So I've been really spoiled with good health for a long time and I hate to complain but I will anyway. I was feeling incredibly nauseous and walked into a hot, smelly theater to watch shaky footage taken from a car accompanied by horribly loud, scrambled audio that wasn't synced properly. I almost died of nausea. I am sure that's possible now.

Okay, whining over. Tomorrow will be better.

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?

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.

Huh?

I may have mentioned this before but I am so confuuuuuused!

Don't get me wrong, I am grateful for the huge strides I've made since beginning Humira. My condition is 100 times better since I started the treatments in September. I'm just not 100% better and I have so many questions.

At this point I still don't feel comfortable eating lunch at work. I eat a small breakfast and a couple of safe snacks throughout the day. This, thus far, seems to make for a reasonably comfortable commute home in the evening. The problem is that I'm usually starving by the time I get home which causes me to eat more than I need to. This is probably also the reason I haven't lost weight - about which I am torn, but that is an entirely different post.

During the week I do ok. Better than ok. I do pretty well. The only complaint I have is my morning gut. My hour-long train ride is still a test to my sanity on a daily basis. Invariably I wake up nauseous and my stomach is uneasy at least until I am safely seated in my office. Some mornings I have heart burn that will not quit. Over the last three weeks, there were a handful of days where I was running for the bathroom by the time I got to work but I only got off the train once to use a bathroom. I am just never quite sure whether or not I have to get off.

The weekends seem to be worse. I have a milk-heavy cup of coffee in the morning (same as any weekday) and then an actual meal for (I guess you could call it) brunch. This is usually when the diarrhea starts and continues throughout the day. Maybe two meals is too much? I should try to have a very light breakfast as I do during the week and see if that helps but it's hard to resist a lazy, Saturday morning breakfast.

I'm not sure where to go from here. Today I filled out a survey for the Humira case study. I realized this process is probably as helpful for me as it is for those conducting the study - if not more so. Having to quantify the severity of the pain and other symptoms as well as how much those symptoms are affecting my life is helpful in gauging how far I've come and what I need to discuss with my doctor.

I'm having a pretty good week as far as my digestive function goes but I am realizing that my biggest problem is the arthritis in my feet, ankles and knees (also in my hands and elbows but less so). If my arthritis is connected to the inflammation in my intestines, why would I still have arthritis symptoms if I am in remission? Does this mean the arthritis and Crohn's are unrelated?

So many unanswered questions.

I also had one of my quarterly blood tests today so I should hear from the doctor soon. Hopefully he will have answers to my questions. In the meantime I am looking forward to a long weekend of rest (and some fun).

Remission Confusion

Every morning this week has been shaky and today I've had some blood. Not a lot of blood or anything but I THOUGHT I WAS IN REMISSION!?

I don't understand what is going on? If the pictures of my digestive tract suggest that I am in remission why am I having symptoms? I thought symptoms were a result of damage to the digestive tract? Is this the best it's going to get?

A Couple Of Questions About Remission

1. Why am I still having issues in the morning?
2. Why are my joints as achy as ever?

Today Is The First Day Of...

...My Life Part Two.

I'm headed out for a much needed vacation. I cannot wait to get out there and enjoy everything I've been missing out of for the past year and a half.

Have a great weekend.

R-E-M-I-S-S-I-O-N

I received official word today that I am in remission! I wasn't expecting this at all. I've been feeling better but not great. I thought they would report that my capsule endoscopy showed improvement but not that it looked good!

Officially, Humira is working for me! My intestines have officially healed themselves! I am officially ecstatic!

I'm not perfect. The Humira is giving me headaches almost daily. My joints are still bothering me a bit and I still have some pain. I may have something else going on or maybe I'm just really out of shape. But, there is light at the end of my tunnel.

This is my first remission so I'm not sure what to expect. I don't know if I will physically ever be back to my old self. Anyone have any advice or insight into what happens next?