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 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 44

I'm sitting on a train, heading home to see my parents. More specifically, we are going to the hospital tomorrow for my father's one month, post stroke visit.

I've lived through enough to know that this was another turning point, when Dad had his stroke. We will tell stories now about before Dad had his stroke. We will talk one day about Dad never being the same after his stroke. We've already worried over what we should have done differently when Dad had his stroke. For several weeks prior to his fall, we noticed that he wasn't the same. Something about his facial expression. He seemed slower, less alert. Something just wasn't right. We should have done something then. But we did! Mom made him go to the doctor who said his thyroid was low. He wasn't home when they called so they told me about his thyroid. I knew it was nonsense. I cursed the lazy, overbooked family doctor I saw as a teenager and young adult. But I didn't do anything.

Then he fell. He told us some story about taking his meds without having had breakfast. We gave him some crackers and water and didn't call the ambulance. He told us not to. We knew he was going to fall as soon as we left him by himself, but we still didn't call the ambulance. We waited until he fell again. We learned not to question ourselves, our instincts.

This brings me back to healthcare and how far we still have to go in this country. Living in New York where the best of the best are available if you have enough money (this absolutely includes healthcare), I've forgotten how mediocre the healthcare is in my hometown and probably in most other rural communities. I've had enough hour-long visits with my New York doctor, his door closed, phone muted, to forget what it was like. I've forgotten how frustrating it is when the one person who may be able to help you leaves the room every two minutes of your fifteen minute visit. I've forgotten how scatterbrained the doctor can be when he has three other patients waiting in other rooms. I've forgotten how devastating it is when the doctor is in such a rush that he mixes up your paternal grandmother's diabetes with depression because it's the next disease on the list, then prescribes antidepressants instead of doing his best to find out that you have Crohn's Disease.

There is no reason why a DOCTOR should see a 64 year-old man with high blood pressure who is having trouble walking and is confused and NOT suspect a stroke. Looking back now, it is so obvious. Thyroid medication? A higher does of blood pressure medication? Did he really not suspect a stroke? Did he not think for a second that he should do the simple motor skills tests the doctor used at the hospital to help diagnose my dad's stroke? The simple, free tests that would have cost him only an extra five minutes? Where was his mind? On the insurance checks that would come rolling in after he cycled through the waiting room full of people?

So here I am on the train. I have to fight for my dad because he won't fight for himself. I'm not ready to let him die because the doctor is too busy.

Day 24

Sometimes, not often, I take a car home from work. The city looks so different from the car. It looks so much bigger. The number of buildings and cars and people and restaurants... There are thousands of restaurants and all that food must be shipped in every day. Nothing grows in Manhattan. There are more people dining out in Manhattan right this minute than live in my entire hometown. Crazy.

Thus ends my stream of consciousness for the evening.

Gluten Free Is For Me

A couple of year ago, when I first got sick the second time around, the doctor decided to test me for Celiac Disease. One portion of the test required that I stop eating gluten for a few weeks. It was painful but gluten and I took a break. In the end I failed the Celiac test but I did feel a bit better at the end of those gluten free weeks.

I went back to eating gluten (it's so hard not to!) and realized what a difference it made. Without gluten my migraines were fewer and farther between. I also found the temporary mental paralysis I usually felt after a meal was missing when I was off the gluten. I decided, after a short fling, it was time to break up with gluten for good.

Giving up gluten is not easy. It's especially difficult with Crohn's as some of us must also give up dairy, fried foods, raw fruits and vegetables, etc. For me though, it's a no-brainer. Giving up gluten is a small price to pay for weekends free of migraines and more productive afternoons at work.

I'm certainly not as vigilant as someone with Celiac Disease must be but I do realize how crucial it is for someone with Celiac to completely eliminate ingestion of wheat. I always order from the gluten free menu if there is one available but I will order gluten free dishes off of a regular menu if there is no other option.

Speaking of gluten free menus, there is an increasing number of restaurants that take their gluten free menus very seriously. Many restaurants flag gluten free plates to make sure there is no accidental contamination. Some send gluten free orders to the table with a manager. There are a lot of gluten free dishes out there that are less than delicious but it's comforting that so many are making such a valiant attempt.

A gluten free diet is commonly believed to improve the quality of life of those diagnosed with Autism. Wikipedia lists Parkinson’s disease, Multiple sclerosis, Seizures, Cognitive problems, Type 2 and Type 1 diabetes, Down syndrome, Rheumatoid arthritis among those conditions which may improve with a gluten free diet. Some believe Crohn's related intestinal damage limits one's ability to digest gluten similar to Crohn's related lactose intolerance. I personally saw no improvement in digestion when I stopped eating gluten. I did, however, experience fewer migraines and less brain fog and that's enough for me.

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.

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?

"It’s weird when you wake up one morning and realize your entire adult life is based on a decision made by a teenager..." -Passing Strange

When I was sixteen I decided I would move to New York from my teeny tiny hometown after I finished college. I was here for a long weekend sleeping in a basement, helping in soup kitchens, cleaning churches... I also saw Rent, ate Sri Lankan food (where is Sri Lanka again?) and met some of the most incredible people. I went home and wrote in my journal that I would move to New York when I finished school and signed the statement to make it official. Silly girl.

Six years later I had grown up considerably from that silly sixteen-year-old but I still had my sights set on New York. It was almost too easy. A childhood friend started dating a Brooklyn boy she had met in college and decided she would move to New York with me. I waited a million tables that summer and saved up $3,000. I packed my things and moved to Brooklyn promptly spending half of my savings on one of three bedrooms in a cheap apartment in a really lame neighborhood in Brooklyn . That turned out to be the easy part.

I began looking for a job as soon as I arrived. I thought I would wait tables to pay the rent until I found a "real" job. It turns out one needs "New York experience" in order to work in any decent restaurant in the city. I did eventually find a job but not before the money ran out. The job turned out to be the most trying experience of my life (at that point). Soon after, my friend moved back home without warning. Then my car died. I eventually got a new car (which came with a monthly payment) so I could drive to my horrible job on Long Island (I know, could it be any worse?).

I hadn't really had some fantastic New York life dreamed up before I moved here -I had never seen Sex and the City- but this was not what I had hoped for. I was alone, broke and freaked out.

Then I got sick.