Double Agent

Has there ever been a time in your life that you remember living as a version of yourself? 

It's possible that some people may find this difficult to relate to [I'm jealous of and applaud those who do], but when we're going through something tough, sometimes we become so used to motion on autopilot, that we forget how to use our manual controls as the days start to get brighter. 

Years and years of full-of-shit song writers and Etiquette books have told us that we should, "Put on a happy face", "Smile, and the whole world smiles with us", and, "Don't cry on the subway in the middle of the afternoon". I personally think that this is all a load of crap. If you don't express what you feel, you'll end up sitting on it until it leaves a frowny face divot in one of your ass cheeks. Just not cute. Being polite is one thing, you definitely should NOT- under any circumstances- hurt anyone Hulk-style if they get in your way on an off day. However, if you don't let out your sniffles [or if you're a manly man and don't cry- your pent up aggression], faking that happy face can end up... not so much in your favor.

While I was sick, I started putting forth a version of myself that I wanted everyone else to see. Partly because I felt like I had to, and partly because I thought it might help to jump-start a little happiness in my life. Not that I faked any interests, friendships or intentions, but really now, how much of your vulnerable side do you let your semi-close friends see? What if your vulnerability is already all over the internet via Instagram or the dreaded Facebook? You want to be strong, right? You want your pals and acquaintances to have a good feeling when they're around you. And not spend time bogged down feeling bad for you. You want to feel inspiring, and inspired...

I'd better not be the only one guilty of this. 

But you may wake up one day and realize, "HOLY FUCK..." And I can use as many curse words as I want to, because I'm no longer with a publishing network and it feels wonderful, "I've been trying so hard to make everyone think that I'm THE STRONGEST PERSON ALIVE, that I've actually become weaker in the process". 

Let me make myself perfectly fucking clear:

Keeping up with appearances is a total waste of time. 

If you feel like crap, stay home. If your friends are putting together a party and you know you're going to feel anti-social, go to the library instead. Cry alone in your bedroom and line all the pillows you own up to punch in rapid succession. Most of the posts I write are instructional, but here's a secret: I write them for myself. So I can look back on them and take the advice that I listed months, or even years, before. I'll be honest- sometimes it's really fucking hard. I've gone months without writing- or even reading- because I knew that I just wasn't strong enough to address the resentment that I had for getting sick in the first place. The honest truth is that I still struggle with it. It's probably not something that will ever really go away, but I'm getting there. 

And these days, I'm not afraid of letting the world see that.

If you're feeling bat shit cray, or you just want to be negative for a while in your room- DO IT. Don't waste your energy trying to push that down into your super awesome depths. They'll just start rotting away. Explaining the smell to your friends and loved ones and trying to get them to stick around and ignore it is a lot more awkward than losing your strength sometimes and letting it be seen.

You beautiful idiot.

You've Come A Long Way, Baby

Stale Cabbage is my baby. 

This is our 200th post.

It may have taken a while to get here [almost two years!], but I couldn't be happier with the progress. Through this blog I've been able to talk about everything that I've discovered within myself, learned about the amazing city that I live in and am inspired by everyday, and all that I've endured through Crohn's therapy. 

Thanks for listening to all of my crap. 

With great friends and family, strong faith, and a little luck...

 I battled through a sickness that almost killed me.

And I talked about it with anyone who would listen.

[Sorry & Thanks.]

Because of that sickness, I developed a better relationship with food.

I started a group for other people in Boston and surrounding areas with 

Crohn's Disease and Ulcerative Colitis who can't eat pizza on the reg. The rest of you really piss me off.

I stopped to listen, absorbing everything that I could from amazing and influential people.

And I learned that networking isn't such a scary thing. 

Put yourself out there, you'll be super happy you did.

I discovered what a great friend I truly have in my Mama.

[truly.]

I lost my apartment, jobs, and most of my friends when I got sick.

I also found that I could turn that around, and felt warmth in rebuilding what was taken.

I launched what I hope to someday call an amazing career.

[first type.]

I'm still learning to drive cars with manual transmissions.

[Hey, we're not all perfect]

I met the love of my life.

I think he even saved it once or twice.

And I continue to learn patience and understanding as I watch him on the road.

[Some new pals don't hurt during these times, either...]

 It takes an immeasurable amount of dedication to keep sane and happy after nearly coming back from the dead. I don't generally pride myself in stick-to-it-iveness, but after knowing the courage it takes to pull yourself together the way I've had to, I'm proud of my ideas, powerful emotion, and strength of character. Illness isn't something that many people understand, and I wouldn't blame most of you if you didn't think as highly as I do about the things that I've done. But I will say this: Most people are walking around with something you'll never relate to, that you're heart will never, ever touch.

Practice understanding, mindfulness, and relentless respect for those around you. The relationships that we create in this life are golden. Caring for others, even in moments when all you want to do is throw a microwave in their direction, is absolutely imperative. 

I can go on and say that without everyone I know, I wouldn't have been able to find remission and stability in my life. But... I'd be lying. The people that I love have helped me [a great, great deal], but if I didn't learn to love myself, I would still be lightyears behind. Heaps of that discovery came as I wrote this blog. Post by post, I continued to learn more about myself. I also got a free, first-look at how I fair at practicing what I preach. For other sick people, I cannot say these next few lines enough- Spend time learning yourself. Take advantage of your down time by learning everything you can about what ails you. Talk to family and friends to make sure that they're on the know about what's going on with you, and never, EVER be afraid to ask questions within your medical community. You ARE one of your doctors. 

After realizing that what you know can save your life, you'll never want to stop learning. That curiosity will continue for the rest of your life- if you're lucky. Don't push your body away.

It's your best friend.

I love mine.

I hope you love yours, too.

Acting Your Shoe Size Can Save Your Life

There are advantages to staying silly. It's been one trait that I'm happy I held onto since my childhood. As adults, we find ourselves obligated to deal with more and more grown-up crap that we hadn't expected. I guess I've always wondered, 'Why keep it difficult?'. Goofing around can lighten any situation, you've just got to know the line that divides silly from disrespectful.

Keeping a silly composition helps immeasurably when you're forced to face what scares you. I haven't seen these videos below since Steve and I took them last year before and after a colonoscopy, during the most intense flare of my life. I like to think that it was this attitude that kept me fighting, kept those around me fighting, and brought me to where I am now. Closer to remission than I have been in over two and a half years.

We've come a long way, Steven.

And we haven't stopped giggling yet.

Thank you for keeping that cute lil' smile on your face, when you were just as afraid as I was. 

Be The First To Laugh

When you're having one of those heinous weeks, and think things couldn't possibly make you feel worse, you should always remember that they have the potential to turn completely around. I've seen this phenomenon many times in my life. I'm not sure if the universe is doing me a solid by helping scoot me along and throwing me some good when I feel like garbage, but I'll certainly take it.

I wrote my last post before I was paid fair value for some really fun illo work, had just found an old letter from my father, and discovered life with a new job that I may already be in love with.

Every time I get super low, I try to remember the U-Turn Phenomenon [or, UTP]. When I'm bumming, I never seem to recall that in every other bad and uncomfy time, I've seen it all turn around. The same wonderful phenom likely rears it's head when you're least expecting it, too. Feeling down, well, it sucks. And when you're in a depressed mood, the last thing you want to hear is some idiot on a rant about how 'it'll be okay'. But shut up, alright? I'm about to drop some insight.

I have friends who are still sick with Crohn's. It never goes away, but when we're in remission is when we totally forget everything that we had just powered through. And who could blame us? I don't want to dwell on how embarrassing it was to be an adult and experience regular accidents, or recall painful and [again] embarrassing procedures. Here's the thing though- when those embarrassing things happened, who do you think was the first person to laugh? ME. If you beat everybody else to the punch by giggling about some crap [ha] that you can't help anyway, you'll be surprised at how much you can actually change the situation. You avoid looking bad by shedding light on the poop in a way that says, 'Hey, I'm sick. And here's how I'm going to handle it', rather than, 'Hey, I'm sick. Feel bad for me, because I'm too wrapped up in how sad I've become to look at this with any sort of positive thinking'. 

Here's my point, and you don't have to know illness to understand it. When your life shits it's pants, shimmy out of those pants and put on some sweats. It's an excuse to wear sweats, and NO ONE will judge you for putting on something comfy after dealing with what was just super unpleasant. You might actually get a few pats on the back. The only thing you've got to promise me is that you'll take a look at the mess at your feet, and choose to skip over it after making a joke -without crying- and wait for the UTP.

Don't cry over poop-filled pants. 

On Being Genuine

Hello, you.

Today I'm going to talk about relationships, and how to make sure that you're putting your most honest foot forward. We've all got friend, friend of friend, family, love, frenemy, and work relationships. Are you the same you for all of them? Or do you have different masks for each?

A good friend of mine explained to me the other night that she regularly watches just how different her friends are in separate interactions with others. After our conversation, I realized that I may have a few masks of my own. There's Networking Event Ali, Sick Game Face Ali, and Yeah, I Was Totally The One Who Farted In The Elevator But Will Continue To Deny It Ali, to name a few. 

The best way to form healthy relationships and keep them that way, is to throw the idea that you have to be anyone other than yourself, right out the window. When you meet someone, it doesn't matter what you're wearing, or how far you are in your career. It's about how you connect with that person on an honest and respectful plane. What comes from truthful and excited interaction can end up becoming a beautiful relationship, work related or not.

Are you close with your family? GET close. They're the only ones who will see you at your worst and continue to love you like they hadn't.

Those are probably the most valuable words that I'll ever be able to give. You can't change blood. And even if you stop talking for a bit, under the anger or frustration, there is always one constant: Love. Your family won't lie to you about what your faults are, so if you feel unsure about how you're coming across, ask someone who you're related to if there's something you can do better. Trust me, even if you don't want to hear it, those words will be astoundingly helpful as you continue to grow as an individual.

***On that note, thank you, Sam. I WAS a heinous bitch to that girl in the subway a few weeks ago. 

Work relationships. They're easy to let become solely business interactions. I think that sucks. Did the guy you worked with that one time just start a family? He was pretty neat, right? Send him a card. You'll feel good, he'll feel good, and it shows others that what you do isn't who you are. 

Friends of friends are fun. They trust that your mutual pal is a good judge of character, so you've already got your in. As long as you don't get drunk at their Halloween party and pee in their broom closet, you should be able to keep that impression. Not to mention, if you trust your friends, the people that they choose to keep in their lives will have the chance to end up long-standing pals of yours in your future. Don't start that relationship with any jealousy or bitterness, like if they were the ones to see The Hunger Games with said mutual friend instead of you, JIM.

I don't have any Frenemies. The one person to have hated my guts in all of my years, that I can think of, is Caryn Moskal, in middle and high school. And she continues to be one of the prettiest girls I've known in real life. 

To sum things up, BE YOURSELF.

Haters gonna hate, real recognize real, and don't worry if you think that you're not good enough. You are. 

Shoot, I bet you're cooler than you know.

Trees And Apples

They say where one grows, the other doesn't fall from. I call bullshit.

When someone mentions Father's Day, I'm usually uncomfortable enough to ease into another topic very quickly. I have a few great dudes to look up to, don't get me wrong. My uncle Eric is my godfather, and he's awesome. My World Series of Poker-playing gramp is the man, and I can call my step-dad up anytime and gab about anything from video games to menstrual cramps [really]. These cool guys aside, I am estranged from my biological father.

I have the mindset to run from anything that hurts. Even after so many years without a solid relationship with my dad though, I'm still not used to the fact that he couldn't be what he should have. I find it difficult to understand how it's possible for anyone who becomes a parent to not want to drop everything they're doing and do right by their little one. I guess he tried when I was small, according to family, but I can't remember that far.

I have plenty of friends who are children of divorce, and we all turned out alright. Some are like me, and don't talk to one of their parents at all. We probably know enough to get out of situations that we'd rather not bring children into, at the very least. I consider that to be pretty valuable, because I can look to a good man like my boyfriend and expect nothing but smiles if we have babies together. If you know Steven, you will agree. Still, there's this guilt in me. Almost as if- even though I know that I didn't do anything wrong- I should still go to my father and let him know that I carry a loyalty to him.

More bullshit. That feeling just isn't fair.

At this point, reconciliation is a fairy tale. I've come too far after getting sick to waste time stressing about it, and that sucks... But I simply can't afford it. I'm building a career, and finally  healing from a monster sickness. I wonder if he even knows that. 

I'm not quite sure why I'm even posting this now. I haven't been able to find my way for what feels like lifetimes. I wish I had my dad to show me the right way. I wish he knew the right way. And I wish that I wasn't so angry that he never has.

Flutter Moment

My Mom is the best.

She's strong, funny, independent, a blast to be around, and knows her stuff about how to be a wonderful person.  She's in an amazing new phase in her life, and I'm super proud.  I don't pay enough attention to the force that she is, and I am beyond grateful to know her, let alone be made up of some of her genes [even if she is way more tan than I am].

I miss you, Ma.  Thanks for inspiring me so much.  I'll be home as soon as I can.

Do you think you could have some grub waiting, and maybe an empty washer/dryer?

Woah-Man Up

This week has been a whirlwind.  Quite the doozy of a Crohn's adventure, not to mention in learning more medical vocabulary.  I just spent another 5 days at Beth Israel, and I haven't even blogged about the last damn visit.  I'll start with last month's, and give a little detail about my first Remicade infusion as an out-patient process.  Ish will get real.  Hold on tight.

Last month, I relapsed.  I thought I was getting better and my magic meds were working.  They weren't.  I relapsed and almost died.  84 lbs. isn't much to weigh, and it's absolutely NO fun receiving vitamins through IV, let alone hear your doctors talk about Total Parental Nutrition [or TPN], a process in which your food is tube-fed to you.  In cases when this is necessary though, all systems go.  A girl's gotta eat, right??  But making that decision is scary, and can be dangerous.

I was lucky enough to have been able to attempt** finding remission without TPN, despite the severity of my colitis.  With Remicade.  I had been running from this drug for almost two years when I finally made the decision to treat my disease in a much more aggressive way than I did in the past.  Infusions scare me.  I hate needles.  Side effects of this drug are terrifying. There's a 1 in 10,000 chance of Lymphoma.  

I had no choice but to suck it up and make my decision.  Dr Flier stood at my bedside in the Stoneman building, a place I know well, with a belly full of baby and a look on her face that made me want to sob.  She was going on maternity leave in a matter of days, and she and I both knew that I would be starting this new adventure without her.  We tried it my way and that didn't work.  The next step is to brave the darkness and make a new effort.  It was this, or lose my colon.  My Godparents were in my hospital room for the discussion, and my Godmother [who had undergone chemo and continues to be one of the most amazing woman I have ever known] rubbed my back as we asked a number of questions regarding treatment, side effects, and my chance for living what would feel like a normal life.  I cried the whole time, but after years of wondering if that would even be possible, I have to admit that sitting in a comfy chair or bed every few weeks while an IV gives me what may keep my serious pain away- didn't seem like such a terrible thing, in comparison.  I agreed to start the infusions, and we made it a reality two days later, on February 29th.

I was still in my hospital bed, IV chilly from earlier saline, magnesium, potassium, and iron infusions.  My nurse was incredible, and made me feel comfortable as the the IV began to drip what may prove to free me from the hell I'd been living for so long.  Steven sat holding my hand, and I gripped my stuffed elephant Emma as we watched and waited.   And you know what?  It didn't hurt.  It didn't didn't do anything that I was scared of.  I had no reaction, other than a sleepiness that couldn't be shaken.  Now that I think back on that, endorphin fluctuation may have played a serious part in my zonking out.  I stayed at Beth Israel for a few more days, as staff watched my weight, and food intake.  I left weighing 87 lbs., and honestly, I felt great.  

On the drive home, as the snow fluttered, everything felt like slow motion.  My mind was racing.  Every possibility, every hope that I had for my life came rushing back in a flood of emotion.  'I'll be strong.', I thought.  'I'll waste nothing.'  

It's absolutely inexplicable, the loss you feel with a disease like mine.  I wake up after a flare, and years of my life are gone, months at a time.  And I feel it, that's the worst part.  I watch it happening, as friends fade from sight.  I am Wesley in The Princess Bride, watching years of my life being burned from my body, as I'm strapped to some torture device.  You hate your job, right?  Everybody does sometimes.  But, you have a job.  You can get up and walk to your car in the morning and drive there, whether or not you feel as appreciative of it as I would, right?

Appreciate that.

Just before my first Remicade Infusion in BI's Pheresis Unit.

After I was discharged, I had to wait a little longer than usual to have my second Remicade infusion.  Usually, you start out every week, then every 2 weeks, then 4, 6, and finally, every 8 weeks.  I was waiting for insurance to cover what I needed.  If you're not signed up for the right program, Remicade can be very costly.  Do your research and apply for help.

This next part is crazy.  Something that I never knew I'd feel.  I went in for my second infusion at Beth Israel's Pheresis unit.  I walked into a long room with windows on both sides, full of nurses and rows of beds.  There were a lot of large machines.  Some I had seen before, some I wondered about.  I felt a combination of guilt and solace.  I was walking into a room where people were receiving chemotherapy.  I felt like an intruder.  Like my disease paled in comparison to what some of the souls lying in the beds around me had endured.  And I cried.  I cried for my aunt, who had breast cancer and died.  I cried for my Godmother, who had breast cancer and lived.  I cried for great friends who have lost parts of their guts to the disease that we live with.  And I cried for being such a weak, weepy baby.  I sat in my small, curtained room at the end of the hall, Steven opened his computer to work as I received what I needed, and we started treatment.  An IV was inserted, and I tried to make myself comfortable.  I was about an hour into the infusion when I started feeling differently.  My lower back throbbed painfully, and I had very serious chills.  Nurses came to my side, and stopped the drip.  I was having a reaction.   Great.  This was what I had been terrified of.  I was then given Benedryl through my IV, and we waited.  Then I developed a fever.  It got as high as 102 degrees before I took some Tylenol to help break it.  Low grade fevers are common with Crohn's Disease, but when they start to climb, it can be a serious cause for concern [I have a thermometer close to me at all times in my home].  We waited again, and after about two more hours, we started the Remicade again.  My back started hurting a bit once more, but we continued.  I fell asleep and woke up to the beeping of the IV machine, alerting us to the empty Remicade bag.  I had done it.  It was a shitty ordeal, and it lasted 7 hours instead of the usual 2, but it was over.  Knowing that I had to come back soon didn't even bother me- I just wanted to get the hell out of there.  

I survived.  It wasn't the most comfy day, but I've had much worse with my Crohn's, and I think that if the worst that Remicade will sling at me for now are a few back aches, I'll stick with it as we decide if long term use is right.  My Crohn's symptoms seem less intense, and I'm gaining the weight back that I desperately needed.  I'm waiting to break 100 lbs. and I am finding more and more energy to do the things that I missed for such a long time.

Don't be afraid to take chances.  Don't be stubborn.  Listen to your doctor sometimes... and while I don't- and would never- encourage anyone to abandon their beliefs, I am a little more humble in knowing that opening my mind to alternatives to alternative treatment may have saved my life this go 'round.  Do I plan on being on this medication forever?  No.  Would I recommend it to anyone else yet?  No.  I am going in for only my third infusion this week.  I am saying, that at this moment, Remicade was the right choice for me.  Don't stop researching.  Don't stop wondering if new things can help.  Don't stop smiling, and most importantly, don't you dare take anything for granted. 

Be brave.  You're a lion.  Your body is yours.

I am so glad that I may be getting mine back.

Fight and Flight

As an inexperienced Blogger, I will admit that my hopes for creating a place where making friend's laugh with witty remarks about links to funny Youtube videos and Restaurant Industry commentary were rather high.  But, as I learned more about putting together what I may look back on someday and want to be proud of, I decided to focus some attention on what's really going on in my life. I am twenty-six years old, single, and reside in Boston. One more thing; I have Crohn's Disease.  


I visited my family in Florida this week.  While I can't wait to fly back home to Bean Town tomorrow, I am terrified.  I am experiencing a full-on Crohn's relapse.  Leaving my beloved city to come back to a place that I moved (slash ran) from years ago was difficult, but knowing in my gut that when I arrive back in the chilly Northeast, I will be sick and without my mom... that's rough.


Earlier this evening, I received a link from a dear friend that couldn't have arrived at a better time.  http://crohnsend.com/ is a website developed by Reid Bryant Kimball, Director of the documentary WANTED: Crohn's End, (which can be viewed at http://www.youtube.com/watch?v=wtR8CmXCndM) designed to educate the public, as well as Crohn's Disease and Ulcerative Colitis sufferers alike, about the Alternative options to help ease these terribly painful and incurable diseases.  


I am being welcomed back to Boston tomorrow by some of the most loving and amazingly bright people I have ever known.  Without my new family, I may not have known the strength that I was able to find in myself  
during these flares of my sickness.  So, I can't stay out late with the girls or wolf down cheesy fries anymore.  And who cares if I'm not able to warm up with a couple drinks out with the gang this winter?  Knowing that there are pals around who will always 'spare a square' is a pretty warming feeling.  Even in the frigid Massachusetts weather.