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.

'Roid Rage

Even though I'm tapering down now, and never did take more than 20 mg/day of prednisone, my face is square again and I have lost my chin.

Prednisone is truly a nightmare.

On Illness

I have been living with Crohn's Disease since 1995. Most of the time it is just an annoyance. This summer, however, I have been under siege. I've been sicker than I have been in the last 10 years, and I'm just now starting to see the light at the end of the tunnel.

Chronic illness is an interesting thing. It's easy to be obsessed with it, and spend all of your time and energy meditating on the ways that your body is betraying you. Or, you can stick your head in the sand and just deal with the day-to-day annoyances (which is my specialty).

One of the ways that I have stuck my head in the sand for all this time is to think that I don't REALLY have Crohn's. Perhaps I just have IBS. Or, perhaps I just eat the wrong things. Or, I'm just lazy and fat and that's why I'm always exhausted and in pain. Plus, I don't fit the profile of the normal Crohn's patient: in other words, rail-thin. I can have a terrible, 3-month flare like I am now and barely lose any weight at all. And, that's even with not eating much.

It is finally beginning to sink into my thick skull that I am Not Well.

I had an appointment with a Colo-Rectal surgeon yesterday. It went well, all things considered, and I am going to have at least one Seton drain installed on 11/2. I say "at least one" because it turns out that I have two fistulas right next to each other. I thought that it was just one big one. Double the fun! And, I am most likely going to give Remicade another shot to see if we can keep the fistulas from coming back in other places. Being hooked up to an IV for 3 hours every 8 weeks isn't something that I can ignore, nor can I ignore the unfortunate placement of two drains.

These last months have been a nightmare. I started feeling lousy in July, and chalked it up to the heat and stress. August and September were almost completely lost to me. All I did was go to work (and poorly, might I add) and sleep. I simply couldn't function. No laundry, no cooking, no cleaning, no reading, nothing. H has been an angel and has taken excellent care of me even when I was incredibly difficult. He has been more stymied by this than I have, because while he has the same disease, it manifests itself completely differently in both of us. He has watched over me and loved me and held us together when I couldn't.

I need to count my blessings every day that we have great insurance. I also need to be grateful that we have access to some of the best medical care in the country and these intelligent, devoted people are working hard to help me function. H and I joke often that if we had been born early in the 20th century we would probably both be dead by now. Sad, but true.

So, if you are ever in need, go to Vanderbilt and get the team of Dr. Christopher Lind, Dr. Roberta Muldoon, and Dr. Nanette Dendy on your side. They will listen to you and respect you and do everything that they can to fix you. And, they will fix me. God willing.

And, as one last thought on this, Every American deserves the same level of care that we receive. H and I are incredibly lucky in that he works for the State and the insurance is some of the best in the country. But, we would be in extraordinarily bad shape, or homeless, if we didn't have the insurance. My heart breaks for anyone that has to even think about how they will pay for medical care. End of political rant.

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?

Fear

Over the years, I've learned to handle the paranoia and discomfort and inconvenience that comes with Crohn's disease. I always know where a bathroom is. I always have baby wipes and gauze pads. I know which foods will cause endless agony and avoid them. But, sometimes it comes back and smacks me without warning.

I've been feeling ooky all day. By "ooky" I mean not quite up to par, but not miserable. Over the course of the day, my exhaustion and nausea has built. I was attributing all of it to the fact that I hardly slept last night. I ran a lot of errands after work, and crashed when I got home. Normally, when I nap hard like that, I feel better from the ook standpoint.

I woke up at 9 feeling worse.

(this is where it gets gross, so you've been warned)

Diarrhea is a fact of life for me, and that's really not a problem. It's so much a fact of life that I start to worry if I have anything else BUT diarrhea. Today, in addition to horrible nausea, I have hardly had any poo at all. What poo there has been is tiny and very unlike my normal horrors. But, there have been copious amounts of gas. So, gas + nausea - poo = TROUBLE.

I have never had problems with strictures, so we're pretty sure that's not an issue. Besides, little bits of pseudo-poo have been escaping along with the gas. But, it's normal for someone that is having a flare (in other words, have ulcers in the intestinal tract) to have the poo slowed down or stopped entirely. Great! No diarrhea, huh? That sounds lovely, but the problem is that it comes with pain.

Lots and lots and lots of pain.

Think about small animals with sharp claws running amok in your guts. Or, think of the worst menstrual cramps that you've ever had all over your abdomen, not just in your uterus. Add to that excitement the fact that you can place your hand on your abdomen and feel the poo trying to escape. It can't though. Reinforcements need to be called in.

H, my beloved, beloved H, just went to the 24-hour Kroger to get some Fleet Phosphosoda and some prune juice. He's pretty insistent that I try the Fleet first, even though it has a history of making me vomit instantly. I just mixed up a batch of Lime Koolaid to try to mask it. At least I don't have to drink the entire bottle, like I would for a colonoscopy prep. You haven't experienced misery until you've had to drink that shit. But, I digress. If I can get some of that down, along with some prune juice, perhaps we'll be able to get things moving. Hopefully, we'll keep the vomiting down to a minimum.

On a happy note, all three girls know that something is up and they're hovering. Cookie is growling, of course, but that's okay. They're all here and they're being very supportive. I'm sure that they'll also stick their paws under the bathroom door as I'm running in and out all night.

I'm not sure why this is upsetting me so much. I think that it's because it has been a long time since I've had to deal with this, and it came on so suddenly. Hopefully, this will work and I'll be as right as rain (or snow) in the morning.

In the mean time, it looks to be a long, long night.

Nut

Not sure why I haven't talked about the trip to the Nutritionist last week. I guess that it's because I've been really busy and it wasn't as traumatic as I had expected.

It turns out that I'm not as inept as I had expected. I'm not eating the wrong things at all, but I am eating them at the wrong times and with not enough frequency. I need to eat 5-6 small meals or snacks every day. And, I need to stick to as low residue of a diet as I can. The funny thing about that is a low-res diet rules out so many things that are considered healthier... like whole grain bread and broccoli. But, I've always had problems with things like that. So be it.

The most important thing, besides giving my body lots and lots of wonderful nutrients, is to get my metabolism fired up.

I've been working hard to drink lots and lots of water and to bring nutritious snacks with me wherever I go. I've also been putting snacks in tiny snack bags so that I don't eat tons of stuff all at once. We'll see what happens.

Dietary Dilemmas Update

So, I got brave and called my GI's office today for a referral to a nutritionist. C, the nurse that I always talk to and just adore, gave me a number for a dietary clinic at Vanderbilt. I called during lunch and got an appointment for 8:30 on Monday. Monday! Holy smokes! I really need to do it before I chicken out.

I'm not sure what I'm so afraid of. I need the guidance and it will only be good for me. And, since Dr. L's nurse recommended them, I'm sure that they'll be fabulous. Help is good.

Dietary Dilemmas

I really need to clean up my act.

Let me clarify. It's not that what I eat is all that terrible. But, I eat the wrong things for my body.

Red meat causes my body to freak out. I'll spare you the gory details, but I can't handle it. Even simple hamburgers just about kill me. And, I don't process raw vegetables that well either. So much for green, leafy salads every day.

I need to eat more protein, because that makes me feel the best. J's Tortilla Soup recipe is cheap, damn good, and makes me feel wonderful because it's full of meat and beans. Peanut butter also works. Cheese is great. Carbs, on the other hand, make me feel incredibly sluggish but that's what I tend to eat because they don't cause any other problems.

I should ask D about her nutritionist. D is incredibly healthy and must be horrified by what she sees here. It's not as much about losing weight as it is about not feeling horrendous any more.

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.

Poor Little Sick Girl

It has been a while since I read anything (outside of current news) that has completely enraged me. Sick Girl, by Amy Silverstein, has done just that.

She was a healthy 24-year-old when she was diagnosed with congestive heart failure. She had a boyfriend that loved her, and was a law student at NYU. It seemed to hit her like a bolt out of the blue. In less than 8 months, she had degenerated so thoroughly that she required a transplant. Sure enough, because she was young and this was so dramatic, she received the heart of a 13-year-old. Anyone else would have been grateful.

From the very beginning, she was admittedly irate with her doctors. Her first cardiologist, before releasing her to another, was told in no uncertain terms that she would ever take prednisone... only because it might cause her to gain weight. She didn't need to know any more about it. She screamed like a banshee and ran down the hall out of her room the first time that a nurse tried to get an IV into her. This behavior from an Ivy League educated 24-year-old?

It took her two months in the hospital to accept that she actually might need a transplant. After all, she wanted HER heart, not someone else's, and even after she had the surgery she complained that her heart was "dead." Yeah, that's the point.

This is where the pity party really begins.

Her boyfriend proposed to her while she was waiting for the heart. Eventually, he married her, and stuck with her through everything. Such a saint I have never seen. She even admits that her behavior was much better when she was around him because she didn't want to upset him. Too bad that she didn't take that hint from him all of the time. Her father organized an enormous wedding for her, complete with handmade dress and 400 guests, and she complained that they all thought that she was well! She had to sneak into the coat closet to take her meds! She had fought for the last two years to ignore her illness as best she could, and then got upset that everyone else was following her lead!

She was supposed to live for only ten years with her new heart, and at the time of publication, had made it for over twenty. Poor, poor sick girl. She finally decided that she was going to stop taking her anti-rejection meds because they were so toxic and so hard on her that her life wasn't worth living. Never mind that her family, husband, and son were completely devoted to her.

Yes, I said son. Perhaps the only non-selfish thing that she did in the entire book was to adopt a boy, rather than giving birth to one.

Ultimately, she learned that the problem was caused by a congenital defect, not neglect from her evil doctors or a virus, as she believed fully. Once she learned that, she was fine with the whole thing! She suddenly turned from a victim that had her life cruelly ripped from her at the age of 24 to a ticking time bomb for her entire young life. It didn't stop her from being a nasty bitch with a death wish, but it made it easier for her to tolerate.

Granted, I have never been that sick. But, I do take a heck of a lot of meds (in fact, for many years I took Imuran, as she does, but in lower doses). And, I do suffer some pretty miserable side effects from them. Immunosupressants are certainly no picnic for anyone, regardless of the dosage. I have also been in tremendous pain, and scared witless, and would have been perfectly fine with dying. But, I've also put on my big-girl panties and moved on with it. Life is good. And, it's a gift. Every day is a gift. Millions of people die because they can't get treatment for diseases like hers, or mine.

The real irony is that she's on the board of directors for UNOS. So, she doesn't want her donated heart, but can help dictate policy for millions of people that do desperately want and deserve organs? That makes me sick.

I thought that it would make me feel better to get this off my chest, but it just makes me angrier. I'm even more angry that I bought the stupid book.

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.

Taps

We killed our toilet. Thankfully, we have two others in the house, but it's inconvenient having to rush down the hall in the middle of the night with severe intestinal cramps.

It's one of those cheap, low-water nasty ones that takes more than one flush to take care of everything from diarrhea to cat poo. And, it has taken more than its share of abuse.

The toilet itself is fine, but we have to change the guts out because it won't stop running. H shut the water off entirely on Monday. The weird thing is that it acted up for a while about a year ago, but it got better suddenly and then started running constantly again two weeks ago.

I'm not a plumber, but I play one on TV.

Excruciating

Last night, I was squatting, digging something out of my medicine cabinet under the sink. Because I am an enormous clod, I fell backwards onto the cold, hard, tile floor. Right on my fistula, which has been giving me lots of problems lately anyway.

I screamed. A came and sat in the doorway of the bathroom as I tried not to cry and hyperventilate. Eventually, I staggered into the bedroom to lay down. Vicodin, here we come!

Today, it's bleeding. A lot. And, it's so sore that sitting is difficult. I am not sure how I'm going to make it all day in the office tomorrow and then at the store tomorrow night. I have to call Dr. L and get more vicodin.

I hate asking for vicodin. I've gotten lectured by him about it so many times, but I still hate asking. We both know that I'm not an addict, I take it rarely, and it doesn't really have any other effect on me than taking away the pain. But, I still hate asking for it. He always gives me a full month and one refill, and it usually takes more than a year to take it all (including sharing it with needy people and refilling it before it expires).

The Perils of Poo in Public

My flare isn't getting any better. Nothing that I eat stays with me for much longer than an hour max. This means that there will be times that I will have a problem when I'm in the office, and it's pretty brutal.

Gene Weingarten has talked about Poo Shame a number of times in his chat on the Washington Post, and I fall firmly in the camp that is in denial. When I was in college, I would hold it for hours until I was able to get to my designated toilet. Now, that's not an option. I use the "courtesy flush" early and often, and yesterday I found myself lurking in the stall until I was sure that everyone that was in the bathroom had left. I am terrified of having all kinds of horrendous sounds and smells that are not fully masked by the flushes and running into someone at the sink.

You would think that I would make it a point not to eat things that would set it off, but that's no fun. You would also think that I would remember to bring the wet wipes from my desk with me, but that's no fun either. I should just offer the suffering up to God. I'm sure he'd be very sympathetic, especially after I ate fries with my lunch.

I used to work with a woman that used to GRUNT when she was in her stall. She wouldn't wash her hands, either. We were all a little relieved (no pun intended) when she was fired.

H is a fearless pooper, but most men are. He knows that if he has to go, he has to go. But, he did tell me recently that he will sometimes go to a different floor in his office to go if he thinks that it will be particularly bad. Perhaps he has a little Poo Shame after all.

feeling very lousy today

I am working from home today because I was up and down all night. I'll spare the gory details but let's just say that my earlier observation about symptoms being surpressed by adrenaline are not necessarily accurate. Or, perhaps now that I'm more relaxed, the adrenaline is no longer an issue. I was in and out of the bathroom a few times last night at job #2. I'm completely worn out and it feels like wild animals are trying to escape from my colon. It goes without saying that the joint pain is pretty insane.

On a cute note, K has been obsessed with the birds outside the bedroom window. She's been sitting there all morning, chattering and twitching and staring. It's really adorable. Thankfully, it's cool today so the window is open and the blinds are up. A is almost as interested (but she's generally more nonchalant anyway).

Not sure if I really want to revel in this

There was an interesting article about Mad Pride in today's NYT. I know that my problems are legion, and that I take a hell of a lot of medication for them (between the depression and the Crohn's). I am much more open about telling people about it, but I don't know that I would necessarily want to celebrate it. Both illnesses are an intrinsic part of who I am, and they're certainly not going to go away any time in the future, but I'm not particularly proud of them.

Blogging about it is enough, and I'm doing this mostly to get it off of my chest. Certainly not out of any desire to become famous or renowned or widely read or anything like that.

Weary to the bone

The last few days have been pretty rough. My company had a 2-day seminar for visiting clients, and Wednesday was spent setting up for it. Actually, all week was spent setting up. Thankfully, I only worked at job #2 on Monday night, and I don't have to go in until 4 tomorrow.

Seminars and trade shows are grueling for normal people, but for those with chronic illnesses, they can be torture. There's no getting around a profound lack of sleep, physical exhaustion from overexertion, and worry about food. I need a minimum of 8 hours of sleep in order to be able to function nominally, but that rarely happens when you have to be somewhere before 7am to set up.

For this seminar, I slept in my own bed (even though it required a 45-minute drive at ungodly hours). I had the option of staying at the hotel with one of my co-workers, but I am terrified to share a room with someone. I never sleep well in hotels, and I like my suggested roommate too much to subject her to my high maintenance. Sleep for me almost always requires some kind of medication, and it doesn't always work when I'm in a different place. And if I don't sleep, I try to read or surf or watch the Weather Channel until I knock out. Not really conducive to someone else trying to get any rest.

And then there's the food thing. I would have been mortified if I had been in and out of the bathroom all night. Food is always dodgy at these things. Breakfast is usually pretty safe (bagels, fresh fruit) but lunch and dinner can be scary fried things off of the buffet. Add a few drinks to dinner or after dinner and it's a recipe for disaster. The best part of this seminar is that, other than the cocktail reception last night, I was not required to stay or entertain for dinner.

After helping pack everything up this afternoon, and taking a colleague to the airport, I was able to get home by 4 this afternoon. I went right to bed. Every joint in my lower body aches, and I'm completely exhausted. So exhausted, in fact, that I'm having a hard time sleeping now. I should have asked H not to wake me up at all, but I was afraid that if he didn't, that I would wake up at 2 am starving and eat something horrible.

So, how do people with Crohn's survive at trade shows? Pain killers? Not eating? Not drinking? I just have to grit my teeth and get through it. I do have a theory about the diarrhea, though. There have been many times, and this week was no exception, that I was extremely stressed out and having a flare. However, I didn't have any urgency or embarrassing moments while I was in public. Of course, when I got home, all hell broke loose. Oddly enough, I wasn't even really crampy. Was I just so distracted that I didn't obsess over it? Is my colon so well trained that it only wreaks havoc in my house? I've noticed the same phenomena when I am on plane flights, regardless of the length. Does adrenaline play some part in slowing the process?