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. 

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.

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.

I'M IN REMISSION.

Resolution?

No more apologizing.

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.

My Friend, Phlegmon

Shooting pain in the lower left side of your abdomen isn't a good sign.  On the right side, if you've still got an appendix, at least you know that he could be the culprit.  But, if you have Crohn's Disease, left side pain is not a nice thing.  I had been out of the hospital just a few weeks when I started feeling a little swollen in the belly and having a strange discomfort.  It got worse over the next week and off I went to BIDMC Emergency.  Again.

It seems as though every time I go into the ER, I am bombarded by heart monitors and swarms of medical staff.  My hear rate has been super high and I am left with those sticky little fellas that hurt like hell to remove. I recommend olive oil and not rubbing alcohol, my skin is crazy sensitive and I have small tears where the stickies were.  This is from last month's ordeal.

Since my regular GI Doc is out on maternity leave, I called within that first painful week and spoke to the fellow who'd taken over my case for the time being.  I told him about my pain, and he said that means my ulceration is 'healing'.  What a stupid thing to say.  Within 5 days of that spectacular response, I was admitted once more.  I had endured huge amounts of pain because I thought I was 'getting better'.  Hooray. 

[I have since been referred to a different doctor on the team and I am much happier.]

After a whole lot of testing in the emergency room, and morphine- which I have never need in the past, we found that I had what is called a Phlegmon.  [We weren't sure if my ovaries were at risk for infection or disease, so ultrasound and a pelvic CT scan were ordered, and once that was out of our minds, we concentrated on this new infection]  A phlegmon is basically a gathering of pus and/ or bacterial infection that pretty much hasn't amounted to anything.  So, pretty much an abscess or fistula that would/ could have formed but hasn't yet.  Kind of like me, right?  All the goods but no formed plan?  Awesome.  At least I can relate to my infections.

If you have a little body, and you're unsure of what your IV needs are, ask your nurse.  They will explain everything you need to know, and they will start your IV very slowly for you if you ask.  Some meds sting a little, and it's really helpful to have a god idea about what's happening.

I was started on two IV antibiotics, which usually work together for things like this.  I had an omental infarction about a year and a half ago, which is another infection- pretty much of the guts outside of your colon.  That was super fun.  Anyway, the two antibiotics are Flagyl and Cipro [those are shorter names for longer meds].  I will be finished with them one month from the initial start date.  Because I needed them through an IV, and we were still unsure of the path of this phlegmon, I had to stay and be monitored for 5 days in the BIDMC suites.  I was in the Farr building this time, a first, and the staff was fantastic as usual.  The only thing about being in the Farr building that I didn't like was the lack of younger people around me.  

I found a dry erase board in one of the computer rooms and made myself a little more comfy. 


There were Therapy dogs in our building!  Their owners, who are volunteers with the hospital, were awesome, and each pup had a great and very friendly personality.  I got to hang with three of them during my stay, and they're a real help when you're lonely or scared.

Ziggy!


Of course, for most of my being admitted, Steven was away on business- this time for two weeks.  That's just the luck we have.  He was in Denver filming for Chrysler, and then in Austin, directing his first commercial for television!  Zipcar!  I am soo proud, and his producer sent him home a day early to be with me in the hospital.  I also had a visit from my friends Rachael and Meg, and it made my week.



I have lots of blog-worthy stuff on reserve from the past few weeks, and I'll load ya'll suckers up soon.  Appointments and meetings that went really well, and some info on new doctor peeps.  Today, I am in some pain.  Healing from an infection like that will leave you with tum tenderness, so you can't rush much.  It gets me out of doing dishes.


I hope everyone had a great Easter weekend.  And if Easter isn't your thing, hope you had a great weekend in general.  I spent mine in Marblehead, healing and having yummy meals with family.  Coloring eggs is always a good time, even if the tattoo-stick-on kind doesn't end up working. 


I feel like I've gotten to a point where I'm gabbing just to gab.  Been a while since I've written and I want to talk forever....  I'l leave you darlings with this.  If you feel like you're in a lot of pain, and that you can 'tough it out', think about your options.  Trust me, you don't want anything getting worse than it has to.  And if you talk to your doctor and get feedback that you're not sure of, don't be afraid to ask another one.


Trust your guts.  Not his.