Healing, It Hurts

When someone with a chronic illness glimpses remission, It's sort of like what most people would expect- a super joyous, exciting and wonderful feeling that, for an instant, washes away any terrifying thought of what it had been like to be sick and waiting for such a day. Some sickies wait years for this feeling, stuck beneath the rest of the world, and I myself am no stranger to it. But what's it like when you're actually in the thick of healing? When you hit the layer of dirt jusssst beneath where the sun shines on the surface? 

Some unlucky and very brave individuals know that there's a roller coaster jammed into that layer. And a tilt-a-whirl. And I can't tell you how many other suspiciously, unsafe-looking pieces of crap machinery there are, meant to confuse the fuck out of anyone on their way back up. 

Fortunately, there are ways to cope with this ridiculously bogus and unfair part of healing. But, it still hurts. You find yourself again when you're body is better, but what no one tells you, is that if you've been sick for an extended period of time, that person you've been waiting to meet again quite possibly may have never ditched his or her unsavory character flaws or deep-seeded issues. Fighting the good [sick] fight turns any wimp into a stallion, but if there were things in there like emotional or psychological issues that were never addressed, the person in the mirror looks less like your old self, and much more like a rhinoceros. I'm not sure why I used rhinoceros there, another part of healing is growing back into your brain's comfy cognition. Never mind the slough of issues that had developed while you were sick. So, what's the best way to heal with your bad self while navigating through your new and exciting life?

Let's start with a basic How-To:

[Unfortunately for you, I never tire of these]

Be Up Front

When you can't remember making plans with friends, or even to be in contact with them, or that you were supposed to keep someone's pregnancy a secret, or you forgot your Goddaughter's birthday, or you went ahead and cried into your pizza for no good reason in front of a bunch of townies at a favorite dive bar and totally freaked out your dude, or that you know you'll DEFINITELY not be participating in any of these online challenges, SAMANTHA, be honest with the people around you regarding why. Staying home and crying to your Puffins cereal is VERY okay. Just make sure you're getting the point across that you care. And you know, write things down once in a while. 

Know When to Call It

Think you might be too emotional about seeing people that you used to, or attending a party similar to those before you were sick, or that you're just not feeling a snug sesh with your ladyfriend or fella? Say so. If these people are worth their salt, they'll attempt to practice understanding, and you won't end up in a ball on the floor three hours later, regretting you left your house.

Apologize for Hiding

Remission means an ebb and flow to how comfortable you are around others. Some days, I just can't do much more than lay around and reflect on how different my life has become in the last year, since reaching remission. Yes, I'm sob/laughing and having full-blown conversations with my dog/ pain management specialist. For me, sometimes that's just necessary to getting through those moments. 

Apologize to [and forgive] Yourself

This is your own. 

But I choose Kung Fu and those orange gummies with the terrible sugary coating. 

When You Need Help, GET HELP 

Save us the time here and just do it, please. It'll be spotty, and you'll blow it off because remembering is painful. But the only way through it, is THROUGH it. Personally, I've been exploring what it's like to have never been diagnosed with a fierce case of ADD. Turns out all of those "attempts" at things make a whole lot more sense, and I'll be better for even trying to understand why. Countless apologies and my incessant thoughts of unwished happiness for wonderful occasions, unfinished collaborations, and never-done favors are something that I'd like to extend to so many people that I care about. 

I sometimes want to tell people who I know are sick, that the journey is so much more than reaching the point that I've gotten to. I understand that communicating something like this should, and does, come with such deep feeling for every individual's experience here. Crohn's Disease both ruined, and saved parts of me. I couldn't be the woman I am right now if I never got sick. I don't regret or hold bitterness for my body. Letting go of that has made this journey much lighter, but I am, and will be continuing uphill for probably longer than I'm anticipating or giving credit for. I can't give much more advice on how to move faster or lessen the load, as I'm still figuring it out. I just want anyone else in the same place on the trail to know that they're not alone. 

The View From Here

Last week, I got sick. Not the kind of chronically sick that I've written about in the past, but a small flu-like infection. This sort of thing isn't an afterthought for a healthy person. Which is how I initially approached the situation- as a healthy person. Because I am now, right? Wronnnng. I've been feeling so great for so long, that I had totally forgotten that the body of a person with an autoimmune disease can take much longer to heal than one without. This isn't to say that every little cold would turn into a three-month infection- I don't want to scare any sickies here- but prolonged fighting for those of us with chronic illnesses isn't uncommon at all. 

I took some doses of Sudafed and drank copious amounts of juice, but when things didn't get better in a hurry I, for the life of me, couldn't understand why.

I guess I've been busy since I went into Crohn's remission last July. I started school this year. I have multiple jobs now, and still do freelance design. I see friends often and hang out with my dog in the park. This is the year I turn 30, and I want to cram in so much of what I simply couldn't in the last few. It seems though, that I'm always running from one thing to the next. When you've got the kind of disease that comes and goes without warning, you take advantage of your healthier time as best you can. You just do. Unfortunately, attempting to make up for the moments you may have lost could turn into your becoming reckless about your body in it's current state and just bring your ass right back to the hospital that you spent countless hours planning your escape from.

I haven't written a Stale Cabbage post in four months. Recognizing a serious health issue is easy when it's your number one job, every single day, for years. When I was sick, I wanted to share my experiences with people who were lonely and scared, who wanted to know more about their sick partners or friends ailing bodies but were too afraid to do it in person. I wanted to create a network of support for sillies who just didn't want to believe that their lives were different. 

And then I got better.

I didn't want to pay any more attention to the thing that stole my life. But as I sit here again, laughing and crying, feeling the pull back to what my situation really is- uncertain, enraging, impossible to map out- I feel it's only necessary to keep myself from turning it away. There's a constant haunting in me to keep in mind that at any moment, I could lose everything all over again. Balancing that fear along with the idea that experience, responsibility for myself that not everyone can understand, and the happiness that brings will lead to healing, is exhausting, and excruciating. Because I'll never really know how long I have until it's time to put the armor back on. 

My reasons for going into detail about how difficult this part is are the same as they've been for every other post I've given. If you are trying to balance a normal life with the fear and actual loathing of a chronic illness, I applaud you. Your fearlessness in continuing to live with each heavy thought is brilliant. Remission is a wonderful, and absolutely beautiful thing. But it is also a heart-wrenching and brutal part of our diseases. Please remember to breathe. Remember to stop beating yourself up about what you can't do yet, and start raising your glass for the things you can [Even when that glass is fulla Pedialyte].Take your time, knowing with full faith that you'll not only be able to regain your self when the storm is over, but you'll become something truly unstoppable in being mindful of the beast you now know. Because your time isn't limited- it's just on a different kind of clock.

So sit the fuck down and relax. You've earned it.

When Recovery is a Bad Word

You know that last post I wrote about refraining from apologies? I suppose it's not so easy to skirt feelings of guilt for being sick for an extended period of time, after all. Keep finding reasons to praise yourself for your most healing moments though, even when you feel you're defending them.

There are always those around you who assume that because you announce your experiences with online friends, that the inside scoop is shared. That your "whole truth" is exposed.

It isn't. Sometimes, in extreme cases- if you're VERY good with a camera- you may even be able to pass these tougher times on as lovely, when they hurt more than the holes in your colon. 

I believe that during two periods in the cycle that is a flare of a chronic illness, you learn who the closest ones to you really are. This isn't to say that people who aren't wiping your ass don't care-- they just may not have the capacity to understand just how many times [or why] you can't stop shitting* your pants. Here are some pointers for those who are recovering from long-term illness and can't stop wondering when they'll feel normal again in all kinds relationships, and how to enjoy getting there.

*Shit being every tiny emotional, financial, spiritual, crisis, among too many others to list here.

Even SPECIALISTS struggle with this. Stumbling upon a strong community of sick or healing people is one of the most valuable things that can come about in the life of someone with a chronic illness.

Finding solid friends with fiercely relentless appetites for understanding can safe your life. Have you had eyes rolled at you, been hurt by it, and then realized that the eye-roller hadn't had more than a ten minute conversation with you in the last year? Me too. This is one of those pieces of advice that I'll highlight, italicize, AND place in bold: Don't apologize for doing things that make you happy after spending ANY amount of time thinking you were dying. 

DO be honest with the people you've let in about what's important to you, and try your best to vocalize the confusion you're feeling about countless lost opportunities, about spacing out on important things like meetings or social do's & don't's, or how to go about managing things that you haven't in a very long time... like money or time management. These are things that most people don't have to think about twice in their day-to-day routine. 
It's very okay that you do. 

Work.
Ugh, am I right? Some sickies with full-time jobs struggle with absences and tardiness pretty regularly. If you've gotten involved with the type of employer that doesn't listen to your needs, get your booty to your local SSA office as fast as you can, and make an appointment with a representative to talk about your rights as a sick person. 

Romantic Relationships.
I'm still working this one out. Let's dog ear this part, shall we? Just be as honest as possible, and go to therapy while you're sick so you don't fuck it up any worse than your sickness will. Your partner might not be able to handle things, and leave.

Friendships.
Ooh, you could make a bestie with a family member who's got the same illness you do, that's worked out pretty wonderfully for me. And where would you be able to find someone like that?? In your disease support community!! <3 This next part is going to sting, and I've gone here before if you've ever read any previous posts, but: It is probable that you will lose a large number of people close to you when you get sick. Think of it this way- if a pal became VERY involved with training for say... a marathon, and you just couldn't grasp what was so special about missing out on parties, ditching regular nights out with the gang, or waking up at the butt-crack of dawn to train for something [they felt] they neeeeeeded to, would you be right there with them in the snow? No. So don't be hurt by your chums not jumping on board with your mandatory marathon. 

I'm tired. I think this post is done.
[Because I'm late now. I can't manage my time well. Read up on what else medical PTSD will keep you foggy about- and don't apologize for needing to]. #sorrynotsorry.

On Starting Over

Man oh man, I'm my best friend. 

Finding the secret to loving your heart if you've never really learned to is a liberating and soul-warming experience. It's also painful and scary as fuck.

This year was an animal that I never expected my eyes to meet. Remission of a serious disease is something that I waited three long years for. Now that it's finally here, figuring out what to do with myself has been even more trying than dealing with the illness itself.  I lost parts of me that I'm not happy to admit to losing, and feel as though I failed someone who came into my life only to care for and love me by taking too long to heal. Feelings of guilt for being sick, as wrong as they may be, are a pretty serious, and pretty common problem for anyone living with a chronic illness. It delays all healing. All of it. It makes more problems than you could imagine for yourself. And if you've got any emotional issues prior to that, you definitely start to feel as though you've been kicked in the grapes just too many times to get up and learn to feel good again. 

So what do you do?

You start over.

You start over in every way. And it fucking kills. But if you're beating yourself up about things that you've had no control over, you're not getting anywhere. You'll never forgive yourself if you don't stop blaming yourself. That's a fact. Stripping your spirit down to reassess your value doesn't sound like a walk in the park, and it isn't. I don't want to start life at 30, I can't even lie about that. Most of my posts are geared toward sickies [and not so secretly, to myself], but this is something that can apply to anyone with heart-shaped baggage. So, you know... probably anyone who reads this. 

I've never quite been here before, but I consider myself extremely lucky to recognize this time in my life as simply the beginning of another process that I'm excited to have been presented with.

While painful wrecking balls came through my heart and tore down walls that I built to keep real love out because it terrified me, because I thought that I didn't deserve it, they also allowed me to finally watch myself grow into a listening and forgiving, wide-eyed learner... and I'm so very happy to let the new chapter begin.

I'll finish this note with gratitude, respect, acknowledgement, courage and love. Because that's all any of us are after, and right now, I feel absolutely nothing else.

<3

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.

When To Stop Fighting

Once upon a time, there was a young girl who fell ill and ultimately lost everything. 

Over three years, the girl slowly regained the strength and mental clarity it took to give her life another healthy chance. What she didn't expect was an uphill, and often times negative battle more terrifying than knowing and learning to respect illness. And she became addicted to that battle. 

Unfortunately, fighting for a career and well being and the perfect romantic relationship is different from reasons behind fighting just to fight. It can be hard for the ones healing to keep this in mind.

"WHAT DO YOU MEAN THERE'S NOTHING ELSE TO TRUCK THROUGH?! WHAT DOES REMISSION EVEN MEAN?? MAYBE I SHOULD START KICKING PUPPIES AND BABIES AND EVERYONE I LOVE  

because I don't remember how else to be and I CAN'T STOP TELLING MYSELF THAT EVERYTHING STILL HURTS."

This is one typical string of thoughts that people who used to be sick and aren't anymore have, even when they're feeling better physically. My body feels great, but the lists and lists of stressful things that normal, healthy people figure out how to balance out as they grow into fantastic, hysterical and wonderful adults feel more and more foreign to me with every cool story from healthy, well-adjusted friends. 

HERE ARE SOME THINGS THAT HAVE BEEN HELPING.

GOOD FRIENDS

[The kind that you don't mind letting sleep over after a night of too much wine.]


GOD DAMN THERAPY
Just go. Even if you've never been sick.

FUN.

I don't care if you get your jollies by flashing your neighbors... unless your my neighbor. In which case, bring it on. Just do things that are silly and amusing before letting yourself blow up or break down-- and don't worry about how you look whilst doing so. Here's the honest truth, baby: NO ONE wants to deal with roller coaster emotions, but if you MOVE YOUR ASS and don't look in the mirror before you do it, it may help. Really. If you feel like poop on a stick, you probably look like poop on a stick. Who wants to psych themselves up for awesomeness if they get all self-conscious and blah blah blah?? In fact, put your mirrors in storage. Life is about enjoying yourself- not what you look like when doing it. Something else? The happy people are the attractive ones.

GET YOUR ASS INSPIRED

[Gili, do you know about this bad bitch??]

EAT WELL

Please? 

DON'T JUST SIT THERE--

Go exercise. Jerk. Do you know how many people wish they could move their bodies, you sunnava bitch??!

DON'T WASTE TIME AROUND PEOPLE THAT DO ANYTHING BUT LIFT YOU UP.

I'm serious. Fuck that noise.

BE ONE WITH NATURE.

Run. Dance in the sun. Hike your face off. Screw staying inside. It will kill your spirit.

Being ready to make your life better takes commitment that you've probably never had to give before. You'll be your worst enemy. Not every day will be happy. People will piss you off, make you jealous, and test your newly found, happy and centered patience. You'll resent your friends, your family, your dog... and anyone who seems happier than you do. You'll learn more about yourself trying to change for the better than at any other point in your life. And you'll be one of those people who never shuts up about it.

I'm not quite there yet, but once I am...I hope I never do.

On Standing Down

Adults make decisions. 

Granted, I live in America and a rather large number of decisions that I witness adults make are rather questionable, if not down right insane. But we're free, and encouraged, to create our own destiny, adventure, or whatever the hipster kids are calling it now. And we're so, so lucky to have that opportunity.

But what about when you've made yourself so informed of the potentially negative or painful results of one decision, rather than the possibility of a victorious outcome? 

OR, you've taken so much of what the people who love you have to say about what it is you should do, that you stop hearing your inner voice?

I'm smack in the middle of making the huge decision of whether or not to start a medication. And I've been here before.

I don't want to be this person anymore.

I'll be honest. The idea of becoming an anti-pharmaceutical crusader and fighting for the natural treatment of my disease and others was an enormous part of my heart for a long time. But I'm sick. And I'm tired. And I feel that if I don't do something soon, I'll be in the comfy wing of the hospital that I know so well, wishing I'd have listened to my doctor. Again.

And blaming her for it. Now, almost one year to the date that I started Remicade, I'm in the exact same place.

I don't want to give up trips, wonderful jobs, and the opportunity for what feels like a normal life. I don't want to hurt my relationships because I'm miserable, or lose parts of myself that I love so much because I'm too afraid to live my life... and I want to smile, feeling amazing and warm, with a baby in my belly. I have to take a leap of faith now and use my brain. I know what a desperate feeling it is to find relief from illness. I know it so well in fact, that I withheld it further from myself because I wanted that healing to come from a natural place. But there is nothing wrong with a band-aid.

If you take it off before it heals into your skin.

For fuck's sake, guys. When you feel it's time to do something, do it. I can always say, with acceptance and self-respect, that I tried.

Because in all actuality, if I don't follow my heart, the only person I'll be disappointing is myself.

Get Up, Stay In, & Get Some

Reaction to a new day/ sleep being over/ waking from that dream where Lindsey Lohan is my Life Coach again, can hit me in two ways. I either bask in the beautiful morning sunshine, or roll myself out of bed with a profound hatred for daylight. Luckily, this morning came with exciting work and I was able to wake happily.

My mornings are usually happy, though. I climb out from whatever cramped position my dog puts me in, with newly-hatched bird hair and the need for a bathroom. Most mornings for people living with Crohn's start this way. Our eyes are finally open, but our guts have been working overtime all night. This is no cause for panic for me, as most people ever staying in my home are kind enough to haul ass when I need them to finish up in front of the mirror. 

Today, I'd like to talk about urgency. Yeah, there was just a paragraph about rushing to a toilet, but what I mean to describe is the feeling that life hands you just as you may think that your starting to slack on what's important. I am one of the countless jerks who puts things off, but mostly because situations that call for responsibility can be almost terrifying, not because I don't have the want or need for progress and grown-up ish to do. I don't blow off all adult thought. Even though every single time I say the word "progress", I sing in my head the song from Nacho Libre that plays during a scene where Ignacio and Esteban shop with their wrestling winnings for the first time. Remember it? Just me?

Maybe that's because people with chronic disease are stunted every time they're knocked on their asses. It's comfy to revert to thoughts that require little effort, or moods in which a chat with a loved one can be helpful in pulling me back to the real world.

[You are a real person, even if you feel you're just watching the rest of them from your window]

In more than a few instances, it's fantastic to get a re-do. I won't even pretend to think otherwise. But, in a lot of cases, I find myself lost just talking to friends that I've known for years. Being cooped up for a long time can really screw with your head. The best thing... okay, after all that dancing around your apartment, the best thing to do is give yourself a project.

Even if you think they'd be super duper teeny weenie to anyone else, projects that you create for yourself can actually save your sanity. I know I've been preaching this for some time now, but it's so true that I even forget, stumble upon the idea all over again, and become inspired just as I had the last damn time I started thinking this way. You know what? Time after time, I am proved right. 

Last weekend, I made bird feeders. That's right. Peanut butter smeared on a spent toilet paper roll, covered in bird seed.

To some of you, it may seem like a ridiculous thing to do. In which case, piss off. To others, it can be a way to give back to our fuzzy, feathered yard- dwellers. And it's something to feel awesome about, because believe it or not, you're putting yourself out there for another living thing [even if he is a little dude who can't tell you if he even likes the seed blend you've given him].

The bottom line is that you can only go at your own pace to feel truly happy. Don't worry too much about what you should be doing, and pay attention to what you are doing. Take your time. You'll be zipping all over the place, wishing you had the time to sit on your bum and talk to birds before you know it.

I promise..

Ass Chappage

What chaps your ass? I don't really have much ass, and that ticks me off. I've got a bike though, so a small one is growing.

When frustration sets in, it's tough to keep telling yourself to calm down. To remind yourself that if you don't take a breather in an uncomfy situation, you'll look like an idiot. Not to mention, all of that negative energy can actually hurt you. There are ways to bring down the boil, and I'm on a mission to find what will help in even the nastiest of emotional kitchen fires.

I started to write down the things that bothered me. What I found was that when I read over those notes again later, I would start to back my bitchy self up. I would literally agree with almost everything that my attitude-spewing self had been thinking when she shittily jotted down what made her upset. I made justifications for acting like a dick, and that's just not cool. So, I brainstormed a bit more, and discovered another way to combat the Cold-Ass-Bitchies.

What your ungrateful caboose will need: 

BBQ Skewers- as many as you feel like scoring to cut in half. Breaking them will result in splinters, and more ass-chapping.

Colorful scraps of paper- I have oodles, and you only need small strips, so you can take them from just about anything that you're not using.

A fun pen- one you love, that doodling feels goood with.

A small jar or cup- to place once-skewers, now Ass Chap Flags in.

Here's what to do:

This is incredibly easy- and feels awesome, so hush up about working for it.

1. Write things that you love on the scraps of paper. 

These could be things that make you happy about yourself, or just things that make you smile. Ex: Puppies.

Three of my Ass Chap Flags say puppies. Please, even Super Shredder smiles at puppies.

2. Dab some Elmer's on the wordless side of your strip of paper, and fold it around the end of your skewer. It should look like a flag, with your message on the outside.

3. Put said flag in jar. 

4. Repeat as many times as you can without wanting to scream.

Now you have a cool thing to go to when you're feeling down on yourself. Or about anything else. Like not being able to go out and get a puppy. 
STEVEN.

Taking My Squirrely Time

How does one hit the ground running?

I'd like to spend my days working, seeing pals, creating a massive sculpture of an Iguanodon or even running again.  After being so sick, I must work slowly to get back into any routine that will require too much energy.  The question in my mind right now is, 'What will I do while I'm waiting around for the strength?'. 


I've been thinking about this for so long, and I feel like when I get a super awesome idea, I remember how long each step will take... and I get discouraged.  Seriously, all I HAVE is time.  Steven is away on biz, [shooting for Chrysler!] and while he's gone I am taking some time to research my options.  I found a therapist who works with folks with chronic illnesses, hooked up with a couple of new doctors that check in on me while my GI Specialist is away on maternity leave, and have a gym membership to rebuild my little body.  I think it will be fun to add little things into my routine every once in a while, too.  My Remicade treatments are going okay so far [aside from some semi-routine complications], and I feel my symptoms being frightened away little by little.  If it works, I'll be steroid-free in a few months and receiving my infusions every 8 weeks.  After some months of this routine, I might be able to think about going back to school.  Mayyybe.  Working in Veterinary Care is something that I've waited to look into for a very long time.
What's another year?  


Base jumping will have to wait.  I've ordered my flying squirrel suit and having my name embroidered name on the chest takes six weeks, anyway.