A New Year. A New Me

How many people can say with certainty that their life is going to change in 2011? Not many. But I can.

This surgery can not come at a better time. My health has been slowly declining since the beginning of December and this past week in particular has been difficult. I've been having non-GI symptoms which are unfortunately part of life with an auto-immune disease. At this point it isn't even the pain that gets me upset. I just feel tired. I'm tired of the mental exhaustion that comes along with being ill every day.

When the surgery didn't happen last week, I was so pissed off. I was afraid it would be another month before they could fit me in, but luckily I only had a week to wait. Everyone kept saying, "It's only one more week" but to me it felt like an eternity. For some reason even though I've been sick for so long, the thought of waiting another week just made me so damn angry.

Anyways, I thought I would have a lot more to say about surgery and I'd be inspired by the new year and all, but I really don't. I don't really have any fears or worries. I'm not freaking out. I'm just R E A D Y to get this damn thing over with.

I've got season 1 of Modern Family and How I Met Your Mother downloaded. I'm also downloading the movie The American. Hopefully these things keep me entertained. I'll probably be on a lot of pain meds so the more mindless the entertainment, the better. If anyone has any suggestions of things to watch I'd love to hear them.

Oh yea. I know for certain that my hospital has internet access so maybe I'll write a thing or two while I'm all high off dilaudid. Just a warning.

Just a little bit longer...

I was a little bitter in my last snow post. Well, a lot bitter. I spent the whole holiday being stressed about surgery and it was for nothing. I wasn't exactly stressed about having my colon and rectum removed, but more-so wondering how my brother was going to manage being my primary caretaker for a week. Then when they started forecasting a snow storm, I became obsessed with wondering if the weathermen would be wrong or not. In the end, they turned out to be right and I was stuck in Philly. If we had left early Sunday morning before the storm hit, we probably would have made it to Baltimore in a timely manner and been able to walk to the hospital in the morning. However, the city of Baltimore had issued a Snow Emergency so I assumed they were gonna get pounded as well. It turned out to be a crazy storm in that the snow totals varied greatly by areas that were only separated by miles. In parts of Philly the totals were over a foot, but in the Northeast, where I live, we got about 8 inches.

Luckily there was a cancellation for a surgery on Monday, the 3rd, so I was able to be fit in then. I am very happy about this because I would go crazy waiting any longer. I've been ready for this for months and the last two weeks I've been very sick. The good part of all of this is that my mom will be with me for the first few days after surgery and then my brother or dad will come towards the end. I can't even tell you how much of a relief it is to have my mom with me (not that my brother is incompetent) because there are just some things you need your mom for. And this is definitely one of them.

Okay, just wanted to fill everyone in on what's happening. I am sure I'll post something more over the weekend. Happy New Year!

Snow

It's almost midnight and I'm still in Philly. We got hammered with snow. Baltimore, however, looks like it escaped the brunt of this "blizzard". Looks like it's a Christmas miracle! Two more weeks with my colon. Oh Lord.

At this point I just have to laugh to keep myself from crying.

Anyways, hope you all had a Merry Christmas.

Nothing says "Merry Christmas" quite like a proctocolectomy

It looks like my surgery will be next Monday, the 27th. The timing isn't exactly ideal, as instead of drinking champagne on New Years Eve, I'll be pressing my PCA button to administer more morphine. Hmm...Well maybe that's not so bad!

The timing really couldn't be better as far as my symptoms, though, because I am feeling like garbage. I am definitely aware that Remicade must have been working more than I thought because over the past two weeks it's been a rapid decline. I am having a lot of issues related to my fistulas and abscesses. This past weekend was particularly rough and it has been frustrating not to be able to participate in all of the Christmas-related hoopla that usually comes around this time.

In addition, I won't have as many visitors as I would like. Since my close family is in Philly and my surgery is in Baltimore, my brother will be with me for most of the time and my mom and dad will probably come towards the end of the week to bring me home. And because my sister has a three-month old and I've been her babysitter for the past month, she won't be able to come down. This doesn't really bother me too much though and I have some friends in the Baltimore area who will hopefully be able to pop in.

In the meantime I am trying to enjoy these couple of days before Christmas as much as possible. I'm sure you'll hear from me again before Monday. Till then..

Numbers Don't Lie

Since 2008, I have spent 123 days either in the hospital or traveling to the hospital for an appointment. During these appointments I have had 26 exams. This includes colonoscopies, xrays, catscans, etc. And perhaps even more interesting is that I have been prescribed 22 different types of medications in an effort to treat my disease. This only counts the past two years.

I got these numbers recently through a partnership my insurance company has with webmd. They are trying to influence members to keep track of their health through this online database. I guess it's a way of taking personal responsibility of your health, partially through your own contributions to the database but also the information given to your insurance company by your doctors.

I don't necessarily think it is a good idea because all it does it provide basic information. For instance, it will tell me the date I was treated, which doctor, and which test was done. But there's no option to actually review the details of the test results. Perhaps this is something they are working on or perhaps the intent is to spark a patients interest in maintaining their own personal health record by providing the database as an organizational tool. Either way, it was kind of shocking to read.

To think that I spent 123 days dealing with the bull that comes along with hospital visits and invested time and money to get to these appointments is staggering. To think I endured 26 diagnostic tests to a manage a disease that couldn't be managed is frustrating. To think that not one of those 22 medicines could provide long-term relief is unbelievable.

In the future I look forward to being medicine-free and disease-free.

Free. I like the sound of it.

Surgery, Christmas, and the New Year

I've been reluctant to post with my surgery date because everything is still very much up in the air.

I am scheduled for December 27th but it has been difficult to arrange it so that my family can be in Baltimore with me. The holidays are certainly a crazy time without the added stress of worrying about squeezing in a proctocolectomy.

Also, I've had a minor issue with my health insurance which is keeping the approval of the surgery from going through.

Hopefully between now and Friday things will be finalized and I can finally relax and just enjoy this time with friends and family. Until then...

Perspective

I've had these feelings, particularly in the past year since re-socializing, where I become extremely resentful of those around me. It could be close friends or even just reading something someones divulged on facebook. I get angry when people complain about dumb things or somehow turn the fact that they are stuck in traffic into a catastrophic event that they need to dramatize for hundreds of people to read. I hate when I get these feelings because it worries me about how I will interact with my peers once I begin my post-proctocolectomy life.

I don't want to act like what I have been through somehow makes me better than others, but I guess when other people complain about stupid shit I equate this to a lack of acknowledgement on their part about the severity of my illness. I am not the one to initiate a conversation about what I'm dealing with, but also, it doesn't take much to open me up. Hence this blog. I think what I struggle with is a desire to share my life with peers, but no one wants to be the one to bring up talk of infections in your butt, poop, and barf. So I sit back and wait, and if that interest is never shown, the resent kicks in.

I also understand that I do have amazing people in my life. Of course I still want to hear the dumb, everyday stories of my friends because let's face it, some of my friends do really dumb things from time to time that really make me laugh. Certainly they aren't going to change the fact that they want to complain about inane happenings in life, because I am still me, and thats what friends are for. I think it all comes down to the fact that I need to open up more so I don't resent those silly moments when a friend wants to bitch about a guy not calling her back.

Last week one of my friends wrote something on Facebook about how seeing the circumstances of someone elses life allowed her to put her own problems in perspective because they were small in comparison. And I think this is an incredibly mature, rare thing nowadays. Everyone, myself included, could benefit from really looking at their life and appreciating the many blessings to be grateful for.

I'm aware that my thoughts are very much a contradiction. This paradox leaves me wanting people to treat me the same, yet sometimes getting frustrated when they do. I guess it's a matter of balance and feeling like I can still be the great friend I know I am but also receive the support I'm not always honest about needing.

It seems that no matter how content we are with our lives we are looking for something wrong when sometimes life is just really really good. It's as simple as that. And my advice is to embrace it in the moment because you never know how long it will last. It's all about perspective.

Dreams

In the past two years I have had major problems with sleep. This is a result of being sick, taking steroids, and having no structure to my every day life. When I was really sick I was pretty much just taking naps all day and night and I never actually got more than two hours of sleep in any given period. Now I've reached a point where I can sometimes get four uninterrupted hours of sleep. I usually wake up because of my Crohns issues and it's not always easy to get back to sleep when you are constantly in and out of the bathroom, in pain, or nauseated.

Anyway, lately I have been paying a lot of attention to my dreams because they are often vivid. I also have recurring themes in my dreams that I can't help but think are symbolic of what is happening in my life. Because I'm waking up so often and I'm never in a deep sleep, I can remember the details of each dream. I often find that I'll be in the middle of doing something during the day and my activities trigger a memory from something that happened in my dream the night before. I can't help but pay attention to these clues.

I have recently had variations of flying dreams. I can recall two recent dreams, in particular, where I was on a plane that was experiencing a malfunction of some sort. The plane was always in danger of crashing, but it was never a frantic experience you see on movies or imagine how it would really feel to be on a plane that you thought was possibly going to crash. The plane always lands but in unconventional places and with a lot of mechanical trouble. So I started googling various things and found this interpretation;

Here is one sound-bite:

"Plane crash dreams can also be seen as the Tower card in the tarot...The Tower card is typically thought of as extremely negative, and usually its appearance does indicate an intense, abrupt, completely life-altering experience. However, despite the pain which may accompany this change, the ultimate result is usually one of the person's life being completely cleared out which results in liberation from a stagnant life."

After reading this and many other interpretations on the web, I can't help but think that dreams have a direct correlation to what we are experiencing in life. I've never been one to read too much into these things because I feel like anyone could apply this to their life if they really wanted to. I've always viewed this in the same regard as horoscopes; the insight is so broad and vague that almost anything you are experiencing in life could be applied. However, with this dream recurring for me I really think there is some meaning to be extracted here.

It's just crazy to think that even when we are asleep, our minds are processing all of the stress from our every day life. The metaphors and symbols present in our dreams are very telling. I think we can often discover the meaning ourselves if we just think about what is happening in the dream and what the most thought consuming issues are in our life are at the moment. However, I also think by reading interpretations you are forced to consider that sometimes there are things in life bothering you more than you thought.

Just a little something to consider.

Hurry Up and Wait

Often throughout my time being sick, I have always been counting down the days until an important event. Sometimes it's been a doctors appointment where I knew big decisions were going to be made. My sophomore year of college it was a countdown until the end of the semester when I would have my colostomy reversed. These past couple of years it's been wishing for time to go faster so I could reach the time period alloted for whatever new therapy to begin "working". During these waiting periods, I've never been able to enjoy anything else that was happening in the present.

I figure in the past nine years with Crohns, I have wanted time to go faster more often than not. The big events of your life when you're dealing with illness are not like most where there's certainty in the reward waiting for you at the end. With chronic illness the waiting games are torture and you never know if the result will be worth the agony and exhaustion it takes just to endure the exams, medicines, and appointments. And even when there is good news waiting on the other side, it just means that you've bought some extra time. Nothing is ever certain.

Part of my decision-making lately has been thinking about all of the time in the past nine years I have lost because of Crohns. I wouldn't be able to live with myself, if, in ten years, I looked back on my twenties as a decade that should have been the time of my life. The time I've lost recently has been especially rapid. Everyone around me is moving and I'm just stuck in a rut where I'm standing still and I have nothing to show for it but the physical and mental effects of fighting a battle that can't be won. Part of me feels the defeat of this assault, but another feels victorious that the duration of this more recent struggle has allowed me to arrive at a place of acceptance.

I can see the light!