Decisions, Decisions

I don't know what happened. I feel like I am stuck in some sort of time warp or something. Are there really only four days left in September?

Since I've been feeling better I feel like I've been going at life full speed. I've been out of town most weekends this year which has been great but exhausting. I'm doing much more socially and otherwise, and it feels really good. Then there's this whole wedding planning thing...

Since we've been engaged we've been making plans (then changing those plans (over and over)). Everyone wants to know how it's going, what we're planning, how far we've gotten, what's the date, where's the wedding, am I going to go to Kleinfeld's, are we going to make sure the wedding is near hotels, the airport, have I thought about making my own dress, and on and on and on and on.

In the beginning, we both kinda got wrapped up in all the silly wedding stuff. As time goes by, I do more and more research and hear more and more ridiculousness from potential wedding guests. I am, at this point, over it. I have decided that six month's rent for an open bar is absolutely absurd even if the venue is near the airport. We are not going to spend a zillion dollars for some stuffy affair that is so not us because it would be more convenient for some people who have never traveled to visit us before and will likely never travel to visit us again. If our venue is too far from the airport or too late in the year, they can stay home.

I will be making some concessions. I will probably wear a white dress, although I will not spend four figures on said dress. I will invite a bunch of people who have nothing to do with my life on a daily (montly, yearly) basis but I will not spend $150 on each of their dinners. I'm not going to spend my life savings to impress a bunch of people who live in other parts of this country and world with whom we have no regular contact. It's all incredibly illogical to me.

I take my relationship, my fiance and my life plans very seriously but, as it turns out, our life is dictated by the decisions we make, not by the convenience of our plans for our extended families. We do not live near either of our families and, although we speak to our parents on a daily basis, they have very little to do with the decisions we make and the way we live our lives. We love each other and respect each other and make a pretty good team. None of this will change because we are married.

So - we are going to have a party. One where a friend marries us and we will eat popcorn and gravy fries and keep some of our money in our savings account. I don't think most of our family will get it, some of them will make jokes and have lots of criticism to share between them but I have decided that's not important. We are going to have a wedding to make our parents happy but we're going to do it in a way that makes us happy.

Phew!

Crohnie

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?

I'm Engaged!

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.

The World Is Watching

I've always liked to watch soccer. Well not always, but definitely since high school. I am always in awe of the athleticism of the players. To go all out for 90 minutes with just one short break is impressive.

I don't watch as much as I used to but I think what draws me to soccer is that a soccer match is all about the sport.* There are ads on the fields and jerseys but there is no corny music played when a goal is scored or at any other time for that matter. The athletes show up, they play and no one tells the fans how they should feel. The fans make their own music.

It's not looking like the US is going to make it through this match with Ghana but it's been fun watching.

*I've never seen an MLS match. Maybe they are just as bad as the other sports.

The last four weeks have been filled with fears and questions, loss and heartbreak, sleepless nights and living nightmares, finality and unwelcome new beginnings.

There has been time to question, to reflect, to talk, to grieve, to be lonely, to begin healing.

The seemingly endless tears have surprisingly dried and life, indeed, goes on. Remaining are beautiful memories, abundant laughter, new perspectives, future plans.

I have grown, am stronger, appreciate and love more deeply but no one will ever fill the empty seat at the breakfast table.

The Coming Of The Ship

Much have we loved you. But speechless was our love, and with veils has it been veiled.

Yet now it cries aloud unto you, and would stand revealed before you.

And ever has it been that love knows not its own depth until the hour of separation.

The Prophet
Kahlil Gibran

Taking A Break

We've hit a rough patch. I'm signing out for a while.

Be well, Crohnies.

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.

Broken Record

Same old story: I'm battling it out with my insurance company again.

It turns out I haven't been getting any money from them because there's a glitch in the system. After I submit my claims for prescription reimbursement they get halfway through the process and the name of the prescription is removed from the claim so they reject it. I had to resubmit every claim since FEBRUARY.

I then found out that the reimbursement check for a trip to see a doctor in March was sent to the doctor. I paid in full, $570 dollars, before I left the office and the insurance company sent more money to the doctor. At this point they owe me about $4000 dollars. Do you know how many paychecks that is?

I am beyond frustrated. I do not know the words to express how I feel about this situation and the fact that I am going to have to deal with this for the foreseeable future. I could scream.

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.

Three Things I Can Never Be

1. A Competitive Eater

2. A Vegetarian

3. A Nurse (bless you all)

Ouch

Last night I felt a little rawness in my throat. I wasn't too worried about it as I've been feeling dehydrated lately and assumed my throat was dry like my hands are when I'm dehydrated. I drank another glass of water then went to bed.

When I woke up this morning it felt like someone was shining a spotlight in my face while choking me and stabbing me in the right side of my head. I think there was a siren and a whistle too.

I stumbled to the bathroom, found some Tylenol Cold and the thermometer and fell back into bed. I didn't have a fever but I wasn't going anywhere. I called in sick, took the medicine and slept for another five hours.

My right eye still feels like it's going to explode but otherwise either the sleep and/or medicine is working. I really hope this is just allergies or something. My next Humira injection is Monday and I'd really like to take it.

I'm going to finish this glass of water then back to bed.

Eggs - An Update

After my egg on Sunday I did have some stomach upset. It took several hours but it was definitely not normal. I think I have an egg problem.

What's the next step?

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.

How Humiliating

Someone asked me today if I'm expecting. Ouch.

First of all - never, EVER ask a woman if she is expecting. If you are not 100% sure - DO NOT MENTION IT!

Secondly - the fact that I was wearing about three layers which included a huge cardigan and an equally huge scarf that was sticking out of the cardigan at my stomach does not make it any better.

And three - I couldn't say it's just a Crohn's Belly. This was the first time I ever spoke to this person!

In my defense, I had just eaten my lunch-snack and my Crohn's Belly was in full effect. I know she didn't do it on purpose because her face turned bright red after she said it and she clearly regretted saying anything at all. But c'mon. Nothing will ruin a girl's day faster.

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.

My Favorite Gluten Free Replacement Foods

There are many, many gluten free products out there. Most of these products are meant to replace glutenous foods. There are gluten free breads, cakes, cookies and pretzels. You can buy gluten free pie crust, gluten free pizza crust and even gluten free bread sticks. Sadly, most of these products suck.

The secret of gluten free eating, for me, is to eat foods which are naturally gluten free. Meat, vegetables, potatoes and rice always taste good. Corn tortillas have become a staple of my diet. There is nothing better than a steaming bowl of grits on a cold day.

There are exceptions to my gluten free rule, however.

-Almost every day I have crackers and hummus for lunch. My cracker of choice: Kame Rice Crackers. I don't love the wasabi or soy flavors but the original and sesame varieties cannot be beat. Kame rice crackers can be found in the cracker aisle of most grocery stores, most grocery stores in New York anyway. www.kame.com

-As far as I'm concerned, the ONLY gluten free bread worth eating is Udi's. The white bread ACTUALLY TASTES LIKE WHITE BREAD! I bought the whole grain variety this week and it is also delicious. A lot of the bread out there is incredibly heavy (think dry fruitcake) or incredibly bland. Udi's is light and bready and, at around five dollars, is relatively inexpensive as far as gluten free breads go. I don't know how they pull it off. I don't eat a lot of bread but when I do it's gotta be Udi's. Unfortunately Udi's is a bit difficult to find. So far I've found it at Whole Foods and I know Fresh Direct sells Udi's. There is a store locator on the website.

-One of my favorite gluten free menus is at Nizza on 9th Avenue in Manhattan. The pasta there is a-mazing. I found out they use Le Veneziane pastas. This is the only gluten free pasta I've eaten that even comes close to the texture of wheat pasta. It is fantastic and, I think, only has two ingredients: corn meal and water. Even gluten gluttons like this pasta. The drawback, again, is that the pasta is difficult to find and can be pricey. You can buy it on Amazon and Quattrobimbi. I found Le Veneziane at a small Italian importer near my neighborhood in Brooklyn for about $2.75 a box. So it is out there, finding it just requires some research.

Lucky for me, I never was a carb lover. I don't care too much for cake or cookies and I never ate a lot of bread. This probably made the gluten free thing easier for me.

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.

Busy

I'm busy but still glad I'm able to keep up. I've been having some digestive issues for the past several days after about three good weeks. I'm trying my best not to get down about it.

I have some free time this week and hope to catch up on my blogging.

Til then.

A New Week

I've had an incredibly busy weekend which included strenuous physical activity but no extra sleep. This does not bode well for the coming week and I'm already beginning to feel the effects. I'm sure staying up to watch the Oscars isn't going to help either.

On the bright side, I am feeling better Crohn's-wise which has allowed me to stay so busy and accomplish so much. I'm looking forward to warmer weather and being able to spend some time outside this year.

Hopefully I will find time to catch up here soon.

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?

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?

PillCam

I am currently about seven hours into my second capsule endoscopy. My first was a little over a year ago - just enough time to forget the details.

I think the dr.'s office may have sent me the wrong prep (yikes!). I ate dinner last night then did half a jug of HalfLytely at 4:00 this morning. First of all, I don't think the HalfLytely did it's job. Secondly, the instructional paper the nurse gave me after I swallowed the pill said to do clear liquids after lunch the day before. No HalfLytely. Oops. I hope I don't have to do this again. It's $1,800 each time.

Anyway, I swallowed the PillCam at 8:30 this morning after I signed the consent form (which, by the way, stated that the incidence of bowel obstruction with the pill is 1 in 1,000 (yikes!)) and snapped a photo of the pill. I've been avoiding MRI machines and resting on the couch since then. I'm not particularly hungry or thirsty but I had a small snack and a few sips of water at 1:30.

I find it fascinating that there is a camera traveling through my body, transmitting images to a tiny monitor. This is easily the least uncomfortable test I've had and I don't mind it at all. Now, if they could figure out a way to skip the prep and a way to make the stickies easier to remove... oh yeah, and take care of the huge price tag.

I'm off to return my monitor.

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.

Happy New Year!

...and I'm back.

I had a fantastic, busy, sometimes stressful, incredibly fattening holiday season. I am, once again, so thankful for my family and friends.

I actually saw some improvements in my Crohn's over the holidays but continue to have problems with my joints and abdominal pain. I am going to continue my regular Humira treatments until I go for another capsule endoscopy later this month.

Last year was a loooong, stressful, exhausting year but I feel like I have made some progress. My barium x-rays showed no significant damage to my intestines and I ruled out a whole bunch of meds. I feel like I'm getting closer to figuring out what works for me.

My resolutions this year are to think more positively (this is on the list every year), accomplish one thing each week on my journey to realizing my dream and to save a specific amount of money.

I wish you all a healthy 2010 and, if it's not healthy, may it be filled with love and support.