Sunday, September 7, 2014

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. 

Wednesday, June 18, 2014

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.

Wednesday, February 26, 2014

Fitting Room Win

I wrote a short few posts over the last three years that described some awful body experiences in my young female life. Having a chronic disease, especially one with such digestive turmoil as Crohn's, can be a terror on your bod. Weight fluctuation is inevitable. Your clothes will fit, and for a while they may not. They probably won't, if you're very sick. And you're GONNA. HATE. EVERYTHING.

The most important thing you can do to stay happy when you lose your curves, is to dance like an idiot. It's okay, you can laugh. Shaking your ass has been proven to brighten your mood, but it can also make you feel sexy as hell! I've been doing it for as long as I can remember. If it's slow jams that do it for you, great. Should bluegrass tickle your fancy, awesome. Maybe a little less sexy... But awesome all the same 

I had a huge victory today. After dancing around solo in my room this afternoon, I scurried down to a few shops while my glasses were being made. I'm always a little reluctant to try on clothes. Since I lost about 30lbs during my last flare of Crohn's, I've been buying clothes, and rarely so, for functionality rather than fashion. When I got into the first fitting room today, this is what stood staring back at me in the long mirror. 

Holy shit. Some of my curves are back.

I have waited YEARS to feel like a woman again.

And you will feel the same way. When the hurt heals, when you learn to seek out the sunshine, and especially if you accept a sick body and life as a vehicle to help others in our horrible but handle-able fight- you'll have spent so much time looking and recognizing the GOOD... Your spirit will smile back at you in amazing ways. 

Healing happens from the inside out. This means that the importance of your regeneration will happen not only in your body but, largely in part, in your mind. Think happy thoughts. I don't care how cheesy it sounds, and your journey will go by in a snap. Take pride in your fight, in your sadness. There's a reason why you're you. 

Not many people walk around with the strength that we do. 

Shake that bony ass with that fierceness that they can't touch.

Monday, February 17, 2014

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. 

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.

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.

Sunday, January 5, 2014

The Whole Truth

I've always been the first person to raise my hand and call "bullshit" when someone close to me is struggling and tries to find a flimsy way to disguise it. I've also been the one, more times than I'd like to admit, to try and hide when I'm truly suffering myself. Which is why my blog posts and sketches are advice-filled and seem to be very self-directed.*

Most people can get by with half-assed self care. When you've got a serious illness, there are times when half-assing anything can be risky. Risky for your health, and risky for your heart.

I regularly depend on my pain management specialist** to cock his head to the side and glare at me as though he sees directly through my fibbing.

Post-flare, the period after you've been sick for longer than you thought you could stand, is proving to be more difficult for me than the roughest situations that my little body has gone through in these past, terrifying years.

Though it may seem foreign to some, relearning most everything that was familiar or had always been second nature is the trouble I've been facing everyday. Strengh comes in very intense waves. I had a heart-breaking separation late last year as most of you know, and that will continue to be very painful. I am grateful to have had such a wonderful, giving partner for such a long time. What I'm describing though, goes much further beyond that. 

If there are people in your life that are starting over, for any reason, and you're not sure how to approach them or you see that they're struggling particularly hard, these are just a few ways to ease their woes:

Make light (but not too light) of the situation at hand.
I bet if you somehow incorporated a fart joke, it would be appreciated. Despite that Cait Dooley says, "If they can't take a poop joke, they're no friend of mine", a point with which I happen to agree very much, it may or may not go over well. Don't ask me, man. Feel the room.

Offer to get them out of the house.
This is an important one. When you're depressed, your body will let you know if a good sob is necessary, right? But that can quickly turn into your general, "I can't move and don't want to", kind of day. It's a slippery slope, chums. Let's help our loves from self-medicating with drugs or alcohol-- and stick to the preferred, excess of cookie dough.

Watch Sci-fi with them.
Or whatever they like, even if you hate it.
Suck it up and be the friend you should be.

Keep dates!
I know that if I make plans with someone and I'm feeling like poop, if they bail, I'm sad about it for a bit. That's just me. I'm a flake though, too. I do it often. Which leads me to my next point--

Don't let pals blow you off when you know their alternative is a pint of ice cream and the episode of Friends where Ross & Rachel break up played three times in a row.
God dammit.
(I flake all the time)

Recognize when someone is trying.
If we try to have a little patience with our wonky friends, it might go a long way in their healing. Not to mention, it could do you some good to sacrifice time, energy, the upper hand in a ridiculous debate, or even your plans for an afternoon at a museum or getting high in your cousin's basement.

I have been terrified to continue with Stale Cabbage because I felt like a cross between a fraud for being a non-sick person, and guilty for becoming a monster while I was so sick and miserable for so long. Fuck it.

Happy New Year.


No more apologizing.

Saturday, October 5, 2013

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.


Monday, August 5, 2013

Water Wait

I've never been sailing. I imagine racing over the ocean with the strength of the wind behind my schooner [that's a fancy sailing ref for those who care] would be pretty amazing, though. You know how sometimes you feel driven to do something really important? Like some beautiful force has it's hand on the small of your back, willing you to keep sailing until you carry it out?


I'm realizing that maybe some of you don't. I know that for a decent chunk of my life I didn't. It happens. You may spill some mango chutney on your fresh new Sperry's on sailing Sunday, sending you into a tizzy so uncomfy that you fall right off your fancy boat, dickey and all, into the heavy current of the ocean waves.

If you know how to swim, which I do [slowly and as awkwardly as you can imagine], it's not impossible to breast stoke your way to shore again. Or at least to some other sailor's boat for a bit, if that's what you need. I don't know the sailing term for bestest pal, so I'll simply call it "Meg*". That Meg might throw you a towel and giggle with you at pictures of half-naked hipster dudes until you're ready to get dropped off at your own boat again. 
*The name Heather may also apply here. 

When you do finally arrive in a safe place, though... when you are happy with how far you've been able to travel without swim-puking, the feeling is wondrous.
Kiiiinda like this.

There have been few moments in my life that felt as wonderful, but I treasure them and constantly hope for more. The greatest part is that I hadn't even believed I would get to this place. The last three years have been the biggest test I could have had. It didn't take much--just my voice. 

Now that I'm approaching top sailing speed, I don't resent that part of my life at all. I must admit though, that I am just a little nervous. Hence the lingering swim-pukes.

My poor boat shoes.

Thursday, July 25, 2013

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.

Sunday, July 14, 2013

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.

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. 


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

Just go. Even if you've never been sick.

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.

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


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

I'm serious. Fuck that noise.

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.

Wednesday, May 1, 2013

If I May

Since it's gotten nicer and nicer outside, and the sun has given me more happiness than I've had in quite some time, I'm in a super excited and silly place. There are so many people wearing flip flops and dresses in the city, so many smiling couples and pups out with families in this awesome weather. It seems as though the fresh breeze is carrying bits of happy around and letting it fall on us just when we each really need it. And it's about damn time.

After the bombing last month during our beloved Boston Marathon, there's been a stillness in the city. People have been unsure of how relaxed to let themselves become. Though we've given a sigh of relief after suspects were caught or killed, we still hurt for what happened... and many people question the tragedy. There are tons of unreliable sources spewing what they think we should believe through the sharing of their websites and photographs. It's maddening. I think we deserve some beautiful freaking weather, and a fresh season.

But there is one absolutely terrifying thing about this month.

May is National Irritable Bowel Disease Awareness Month. That's actually wonderful- far from terrifying. But it's the month that I, along with countless others, was initially diagnosed with Crohn's Disease. The change of seasons can wreak havoc on an autoimmune disease, and many people start to flare when the weather gets nicer. It's a crap shoot, but it's our job to try and find things to be happy about everyday. If we don't, we run the risk of getting sick and becoming super miserable. The positive vibes you give yourself are in direct correlation with how good you feel.

If you've got blood running through your veins, you've got the opportunity to make your time on this planet worth something. Even if you're sick. Especially if you're sick.

Make a plan.
Show your teeth.
Grab happiness by the nape of it's neck, and make it your own.
Sometimes even a well-deserved, gorgeous new start is scary. The truth is, people with a lifetime sickness never stop working. Ever. Being on your toes is something that becomes second nature, but can hurt... so we've got to make sure that we're well-rounded in our activity, knowledgeable of our conditions, and willing to sacrifice a lot of things that mean very much to us. At least, for the next few months anyway, we can fight, fight, fight with our toes in the sand and our faces in the sunlight.

You can turn a shitty situation into an opportunity to help others. And to help yourself.
Every moment is what you make it. 
Don't ever let a doctor tell you otherwise.


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