Stream of Consciousness

I spend every day obsessing over what I'm eating or drinking and when.  I have to find a balance between a headache and a stomachache.  Eat something in the morning, but not enough that I get sick at school or on the way there.  Then eat a little between classes and drink some water, but not enough to upset my stomach.  I'm dehydrated.  My head hurts.  I'm whining again.  Too much.

When I come home late at night, I binge.  I'm so hungry.  I know I will be in the bathroom several times, as long as I'm awake.  I can't eat vegetables or the pain will be horrible, so I eat starchy, salty things.  Crap void of nutrition which will only make me feel worse in the long run.  But at least the hunger is gone now.

A handful of vitamins and a bunch of water, which I choke down because I know there is nausea to follow.  I work late into the night because I know I will have to pay in the morning.

I sleep.  I wake up.  I go to the bathroom.  I go again.  Time to start obsessing.  I have to if I want to keep this up.  I think I'm doing a good job hiding it.  I'm always either hungry or in pain or tired because constantly fighting hunger or pain is just so damn exhausting.  It takes me longer to learn things because  my focus on my work is always secondary to what my body won't let me ignore.  I can't stop obsessing because, if I do, I will likely shit myself in public, which would be the worst outcome.  I've worked so hard to avoid it.  So far, my only victory.  Well, that and I haven't missed a single class or extra activity the school has scheduled for us.  That's something, right?  

I don't talk about it much, at least I don't think I do.  The person who matters most to me thinks I'm whiny and dramatic, possibly a hypochondriac.  I don't want anyone at school to know, I need to work in a couple of months and I don't want to be the sick person no one wants to hire.  I was quiet for a while, then I decided to feed off my illness because it feels like all I have right now, make it part of my work.  I immediately regretted making it a part of the conversation.

My mind is weak with anxiety.  I'm constantly anxious, cripplingly anxious.  I second guess every decision I make.  I'm not the same person at all as my well self.  I'm a total mess.  I have no confidence, I hate the way I look.  I scrutinize everything I say and do.  I'm so nervous about leaving the apartment that I do crazy, crazy things before I leave.  I make sure I've turned off the stove, even if I haven't used it since the night before.  Is the fridge closed?  The window locked?

I try so hard not to talk about it to my husband because I know it's boring and it gets old.  When I have to explain that I don't want a salad for dinner because it will make me too sick, I scream it at him.  Angry because he made me whine about it, prove I am a whiny person.  Then I hate myself for being weak, sick, angry, for taking it out on him.  I want to have a salad for dinner because my body craves the raw vegetables.  That's all I eat when I'm healthy.  That's all I want right now.  But, in the end, it would be a bad decision.

When I do speak about my illness, there is no shortage of advice.  "Eat rice, it will bind you up.  Take Vitamin D.  Get some rest.  You just need some exercise."  I can't explain to someone that my immune system is tearing up my digestive system.  That I don't have a bout of diarrhea, I have inflammation and ulcers in my intestines that will not allow my body to properly digest food.  Toast and bananas are not going to be easier on my stomach.  If I take a day off, I will not be able to catch up on my school work.  You can't believe I have that much school work?  Well I don't know what to tell you.  There's no way food can enter and exit my body in less than two hours?  If you say so.  They can't understand.  I wouldn't either if I didn't live this every day.    

I'm angry with myself because I haven't done enough work, my apartment is filthy, I fell because I haven't replaced the boots that have no tread left, I'm taking the wrong supplements because I haven't shopped for the right ones yet, I'm out of shape, I'm not making any money, I haven't spoken to my family enough this week, there is no food in the fridge, I'm not drinking enough water or eating the right things.  I don't even know where to start this to-do list with another, overwhelming to-do list of assignments/preparing to start a business is already on the page.  A few hours of shopping could wipe me out for the day and I won't have the energy left to finish what I need to do.  I don't look sick, I can't possibly be that weak... 

I've kept all of this up, every day, for months.   

I could just get back on Humira, but I'm getting older.  My window for having children is closing and I would rather not risk the medication.  In a few more months, I will be finished with school and, that's it, I will have no more excuses.  But how can I do this AND raise children?  I'm afraid that I can't.  I'm afraid that I will let myself, my husband and, worst of all, my children down.   

I'm so afraid of everything right now.   

Day 186

I read a tweet this morning about Crohnies and extreme heat and it got me to thinking...

It's been hot here in New York.  Really hot.  For months (okay, more like a week).  I "don't do well" in the heat.  I haven't since I was young.  I used to play softball in the summer and, while everyone else was doing just fine, my face would turn bright red and I would not be able to cool down.  I remember jumping in the community pool after the games and feeling my face burn against the cool water.  It would take me hours to return to normal.

Then there's now.  We went to a photography school/gallery/cool, temporary space made from freight containers last weekend (http://photovillenyc.org/).  The walk to the park wasn't so bad, but we ended up entering the wrong side of the park and walking in the sun for, I don't know, ten minutes?  Now, I just want to say here, I am a walker.  I live in New York.  We walk and we walk fast.  It's part of living here.  On a normal day, a half hour walk wouldn't even phase me.  But this day was hot.  It was already in the 90s by 11:00am, and the humidity and sun were oppressive.  By the time we got to the lecture I really thought for a few minutes that I was going to pass out.  I got to the I'm-so-hot-I'm-cold point and thought that was it.  I sat still and drank a bottle of water until I felt back to normal.

For the entirety of this heatwave, the news radio station I listen to has been constantly reminding listeners that the elderly and those who suffer from chronic illness should take extra care in this heat.  It didn't occur to me that I belong in that category until today, until I read that tweet.  I've been feeling so well for so long that I sometimes forget I have a chronic illness.  It hadn't occurred to me that the headache I couldn't get rid of this week was heat related.  Or that the heat is the reason I've been waking up in the morning feeling like I haven't slept a wink.  Or that the heat is causing the joint inflammation that is causing the feeling that my shoulder bones are grinding together as I type this.

I have been staying indoors in the air conditioning and drinking gallons of water, but maybe it's not possible to totally avoid the effects of extreme heat.  I walk around with a lot of pain a lot of the time, I think I'm just used to living with it.  But sometimes we must surrender.  The A/C is cranked up and I'm going to take a nap.     

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?

What? It's August?

Wow

This year started off like most others, for the first few weeks anyway. Then...

In January I got some good news, fantastic news. In February some bad news. March and April were trying and full of uncertainty. In May I witnessed a terrible loss. Since then I have not had a chance to stop and breathe.

It has been a year of nonstop travel and house guests. We have been so incredibly busy between hosting and packing and flying back in time to get to work and trying to take care of ourselves and eat well and get enough sleep while still finding time to do the laundry and clean the apartment before we have to pack up the suitcases again and maybeweshouldleaveeverythinginthesuitcasebecausewe'releavinginafewdaysagainanyway!!!!!

The last few years have been trying, some of the hardest of my life. I am so thankful now to have my health back for the most part. I am thankful to have my family. I have witnessed what it is to lose someone and I now appreciate my own family much more. I realize now that we don't have all the time in the world and I want to take advantage of what we have left.

I want to do everything I can now that I am physically able but my body lets me know when I've overdone it. I am still working on the play/work/rest balance and I suspect I will never quite work it out. The joint pain remains. I'm actually beginning to realize it's not necessarily my joints. I feel it in my neck and my muscles. I'm beginning to think it is Fibromyalgia as the rheumatologist suggested earlier in the year. It is disruptive at times and I think I will have to follow up, eventually, when my last flight lands in a few weeks.

Complications

Things are getting so complicated.

I'm stressed. My routine has been disrupted. I'm not sleeping well. I was wrong about the timing.

For the last few days my stomach's been a little off. Friday I was in a lot of pain - not my stomach - my joints, my bones, my muscles - I'm not sure what it was. My arms hurt, my hips, my toes...

I was brave today. I took two Tylenol and walked at least 50, 60, 75 blocks. I had some business to take care of. I had a cloudy head to clear. I had to get out of here.

I'm swollen, I hurt and my stomach is so so upset.

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.

Timing

Life is strange.

I lived most of my life up to this point, not really with reckless abandon, in a less than thoughtful way I guess. I'm not a huge risk taker and I always consider the future before making a decision but I didn't necessarily treat my body as my temple. I have never been one to get enough sleep. I used to love to go out with the girls and have (more than) a few drinks. I generally ate reasonably healthy food, but I haven't really gotten enough exercise since high school.

When Crohn's hit I had to make a big change. I could no longer physically proceed with my life on the amount of sleep I was used to. Naps became a regular occurrence. I had to begin analyzing everything I put into my body. No more drinking or staying out late.

Now that I have a disease and have battled through a two-year flare my perspective is completely different. I appreciate my life and my health so much more than I ever could have before Crohn's. I am so thankful that I can clean my entire apartment in one day or do laundry in the morning and have enough energy to leave the house again in the afternoon. Don't get me wrong, I would absolutely send this disease back where it came from (the innermost reaches of the sewer system?) if I could - but I can't so I am learning from it.

We're going through some things here that I don't know if I could have handled a few months ago. The timing of my recovery from the latest and longest flare could not have come at a better time. I am in such a better place both physically and mentally than I was even a month ago.

These new developments have me appreciating the uncertainty of life. I know it's cliche but we really have no idea what could happen tomorrow. Life is short. There is no time to waste. Now is the time to get rid of the people who keep you from being your best. Those who make their support and love known deserve your support and love in return. Give it to them freely. Let them know you love them with your actions. Give hugs and kisses. Make yourself happy.

Eggs?

On weekends we like to sleep late and have a good breakfast. I always had more stomach issues on the weekends but I assumed for a long time that it was because of the volume of my breakfast as my weekday breakfast is much lighter.

I generally would have some egg whites and turkey bacon which, to a normal person, might seem like a light breakfast. For a Crohnie, it's playing with fire. Generally, I paid for these breakfasts as the stomach upset would start immediately after breakfast and continue throughout the day. Now that I'm feeling much better, I'm beginning to wonder if it's the eggs.

I'm still eating light most of the time and I'm not completely symptom free but the symptoms I'm having are far fewer and farther between than they have been for the past two years.

I was just thinking back to last weekend. I took a road trip to attend a wedding. Spending a weekend a few hours away from home and my comfortable food would have been incredibly anxiety inducing a few months ago. Now? Not as much. I was still a bit nervous and my stomach was uncomfortably distended for most of the trip but I didn't have to run to the bathroom at all - except once, soon after breakfast including egg whites!

I've decided to test my theory this morning. I don't have anywhere to go so... I finished an egg on a slice of gluten free toast with some cheddar at 10:00. I'll keep you updated.

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.

Health Care Reform

I will be honest, I haven't found the time to read the details of the health care reform bill that will likely be passed or shot down by Congress this weekend. I know generally what it's about but I also know there are a lot of rumors flying around the web. I don't know exactly how this bill will affect me but I doubt anyone really knows. I do not know if this bill is the right move or if it's a step back. This is what I know.

I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.

I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.

I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.

This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!

You cannot convince me that we do not need health care reform.

Blah

I spoke with my doctor last week. My blood test was fine except for slightly elevated liver levels (sorry, I have nothing more specific). He thinks it's probably from the Tylenol I've been taking for headache but my numbers were not high enough to stop the Tylenol.

The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.

Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?

And so we wait...

Weekend Madness

My weekend pattern continues. I did just fine this week but Saturday and Sunday were a different story. I did have an egg for breakfast each morning this weekend but I don't think I do that every weekend. Or do I? Hmmm... Anyway, as I sit here typing my stomach is churning away. I'm sure I will have to take a break in a minute. Those heavy butterflies are making their way through my abdomen.

I'm thinking it's time to see an allergist in case I'm eating something that's making me sick. I've said it a million times but I need to do it. I will put it on my to do list for Tuesday. I'm sure it will take a few days since I will have to deal with the insurance company first. The insurance company always adds about seven layers of annoyance to any search for medical care. I feel my blood pressure rising just thinking about the initial phone call. Yuck.

This weekend I am also having a lot of arthritis pain. I spent more time on my feet yesterday than I normally do. This morning I walked to the laundromat with a heavy bag on my back and I did a lot of walking this evening. It's pretty cold out there which probably doesn't help. So there are the reasons my joints are bothering me but I have no explanation. Why doesn't the Humira work for both? I have to call my Gastro for blood test results on Tuesday so I guess I will seek his advice then.

On a good note, I am feeling more confident lately and am trying to get out more now that I am feeling better. I've been busier this past week than I have in a while and it feels really good. I am hopeful.

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?

Location Location Location

I've been thinking lately about my location and how it affects my health. I have read that Crohn's only occurs in developed countries which makes me wonder if this most-developed city is making me sick. The pollution in the air? The preservatives in the food? The chemically filtered water?

I never experienced Crohn's symptoms when I lived in farm country. Or did I? When I was in third grade I was put in a stressful position at school. I remember having sharp stomach pains before I left for school in the morning. I was drinking Mylanta at the age of eight. Were these pains an early sign of digestive issues?

I've also read that Crohn's can (rarely) present itself as joint and lower back pains in children long before there are ever any digestive symptoms. I have vivid memories of intense aching in my legs, particularly my right knee area, for a good part of my childhood. It usually was worse at night and the throbbing pain sometimes kept me awake. I was once put on Prednisone for asthma and had such intense knee pain that I could not walk. Early signs of Crohn's or just "growing pains"?

Speaking of Prednisone, I took a lot of medication as a child. I had many ear infections and took my fair share of Amoxicillin. In fact, in my early teens, I was put on Amoxicillin for the last time when I broke out in hives. No more -cillins for me. There's the Mylanta I've already mentioned and all of those vaccines... Is my immune system now having it's revenge?

Don't get me wrong, I had an amazing, happy, carefree childhood. I was active in both sports and academic activities. Other than some ear infections, asthma, and some allergies I was pretty healthy, but in college I smoked cigarettes and drank way too much beer. I worked part time for the university and did well in school. I made friends and went out and didn't eat right. My senior year I started working out and paying attention to what I was putting in my body. I didn't smoke or drink as much. I got more sleep and took better care of myself but I could have done better. Did I ruin my body with those few vice-filled years?

After college I moved to New York. I lived in Brooklyn, worked on Long Island and eventually began working in Manhattan. I paid very close attention to what I was eating. I went out occasionally and didn't get enough sleep. I had no money but I made some friends and was having a good time. I got a better-paying job in Manhattan and was promoted after two months. This is when I got sick the first time. I still work in the same office I was in then. I know the air in the building isn't the best. My nose runs all day and there is a chain reaction of sneezes when heat or air conditioning kicks in. We're in the heart of midtown and I'm sure the skyscrapers make it so the pollution from the street just funnels right up into my building. Maybe the bad air confused my immune system?

I know one day there will be answers to all of these questions. Or maybe the answer to all of my questions is yes. Maybe all of these factors added together kicked my Crohn's into gear. Maybe I'll never know.

I do know that this is the most amazing place to live - if you're healthy or rich. If you're not wealthy, you have to live far away from the action or in a less-than-safe neighborhood. You have to depend on a public transportation system that is, at times, less than dependable. The city can be very cold or very hot. There are few options for public restroom access. Life here can be so stressful and there is never, ever enough time.

I sometimes have these fantasies in which I move to another city where the air is cleaner and there are bathrooms everywhere. The sky is always blue and everyone is smiling. And all I needed was some fresh air to make my Crohn's disappear...

*Disclaimer: There may be no truth at all in anything "I have read". I can't even remember where I read some of this stuff. I will consider citing some of these things if I ever come across them again.

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...

Huge Pain In The A..

Today was incredibly discouraging. I wasn't feeling great when I got up but I left for work anyway. Halfway to the office I started having some pain which could mean disaster or could just be some pain. There's no telling. I was in between train stops when it got really intense. I've been sick every day for a long time now but the pain was always dull and achey (thank goodness) until recently. Today it was burning, stabbing pain that almost brought me to my knees on the train. I spent the next ten minutes trying to stay upright and devise a plan. When the train finally stopped, I got off to seek refuge (a bathroom).

Anyone who has had an attack in an inopportune location knows the minutes until you get to a bathroom are the longest minutes since the beginning of time. Here, in New York, there is an added element of anxiety because there are guards at ever door, locks on every bathroom and rules regarding who can access the key. I quickly found a clean (bonus!) bathroom and snuck into it. I spent eons inside as I still had a 15 minute ride to work from the bathroom and wanted to make sure I would make it alive. Eventually I made it back to the train and then to the office.

I tried not to let my crappy morning ruin the rest of the day but the pain and exhaustion had other plans and the day was pretty much a write-off. The headache came in the afternoon and has yet to leave.

I've noticed an increase in the intensity of my pain since I started Humira. I am wondering if this indicates a narrowing of the intestine somewhere in there but the liquid nature of my -you know- made it easy for it to pass through. Now that the nature of my -you know what- is no longer always liquid, it's causing horrible pain. Anyone?