Buffering...Are You OK?

Buffering...
"Are you OK?" 
I've literally been asked that question an infinite number of times.  I am grateful when someone shows genuine concern.  I am.  I realize how lucky I am to have people in my life that actually give a shit.  But for just a moment, I'm going to tell you how annoying that question is.  It's right up there with "How are you feeling"?  When someone leans in and looks at me like they feel such a deep, dark pity for me that it actually pains them to ask me how I am doing.  It makes me feel the opposite of OK. 
I also realize that if anyone other than my Mother (Hi Mom) is reading this there will inevitably be people, or a person, that thinks that I am an ungrateful asshole for even thinking this let alone writing about it.
But when you have a chronic illness for which there is no cure and you are hospitalized for at least a week four to five times a year, those questions are loaded.  Do you know how long I have thought about what to say when someone asks me "How are you feeling"?  What if  I answer truthfully? What if I say that I am feeling like shit and I'm tired from all of the mediations and the hot flashes from said medications?  Or what if I tell them I can't sleep?  Or tell them how I go through like five rolls of toilet paper a day?  Do you honestly think that an actual answer is wanted?  Or, horror of all horrors, is it just a way for THEM to feel better in having heard that I was just in the hospital for the umpteenth time? 
Cue ungrateful bitch face.
I have to say it.  I mean, I know I cannot be the only one living with an invisible illness, or any illness, that is really sick and tired of people asking "Are you OK?"  NO! I want to shout sometimes! I AM NOT OK! In fact I am the opposite of OK.  I am fucking pissed and in pain! And I have eaten so many Zofran to deal with this 24/7 nausea that I am starting to fear that those scary side effects might actually start happening to me.  Two heads! Do I have two heads now? Great! That's just f'ing great! One more thing... And so it goes...
The real question is what does it take?  What does it take to handle this? What does it take to not only live with an illness but to handle the ripple effects of it?  Because I will tell you that strength wavers.  You can be the most mentally tough person alive and there will still be moments when you want to scream and give up.  Pity.  Self -pity.  That's what they call it, right? "Feeling sorry for yourself." Even that is annoying.  Everything about the phrase "feeling sorry for yourself" is annoying to me.  Sure, we all know that person that lives in a perpetual state of "why me?"  And they are annoying, right.  Yes.  I know that.  However, feeling bad about your shitty situation is perfectly normal.  You just can't live there.  And maybe that is part of my taking issue with the question "Are you OK?" 
Most mornings I have to make the conscious decision not to wallow in the "Why me?'.  When I open my eyes, I say out loud "Today is going to be great!"  And of course I know that just because that is how I want my day to be it does not mean that is how the day will go.  But I've learned that if I give it a good try, it may end up not being so bad.  It's like taking my brain to the gym.  Thinking positive thoughts is the equivalent of running on a tread mill to train for a marathon.  And isn't that what life is? A marathon. 
So, when someone asks me "How are you feeling?" it's like a reminder of the illness that I am trying to defeat, to deal with. It is a reminder that I haven't been good or OK.   It's a tiny little setback, if you will.  Or at least that is what it feels like sometimes.  And since I'm being honest, there are moments when it feels like that is the only thing that I talk about anymore.  Like Crohn's has somehow become my identity and I am now one-dimensional.  Like I am a sketch on a piece of paper with the word "Crohn's" scribbled on my forehead.  Can you see how frustrating that might be?
And deep down I know that isn't true.  I know most people actually care and really want to know how I'm doing.  I know.  This is just another ripple effect of the disease. It affects everyone that genuinely cares about me.  And that is frustrating too.  So now I'm feeling bad about feeling bad about feeling bad... Wait, what?
I don't know.  I guess maybe the point is that everything about Crohn's disease and illness is irritating.  But without friction there would be no fire.  Without pressure there would be no diamonds.  And if you are always comfortable, how or why would you change?  Grow? 
And maybe THAT is the point--Learning to use the terrible, uncomfortableness as a tool for me to grow into a better person.  I have to find the positive in all this negative.  The light.  I have to find the lesson.  Because isn't that what all of us really want at our core? A purpose.  We all just want to figure out the meaning, the why. 
And even if I never figure out why at least I can take my pain and use it for good.  Give my pain a purpose, that is what I want to do.  That will be the light in the darkness.  That will be the lesson. 


I still don't know what to say when someone asks me if I am OK.  If  I answer with "Good." it just leads to more questions.  "Really?!" "How?!" "What have you been doing...?" Etc. Etc.  I just keep reminding myself that they mean well, that they care.  And I feel grateful for that, for them.  Maybe eventually I will figure out the correct answer?  While I tip my hat and learn, growing in gratitude and patience (and buy toilet paper in bulk)  I'll keep giving the lame-ass answer "Just hangin in there."

healthy self-- heal thy self

What does it mean to "Be Healthy"?  Honestly, think about it for a second... What is health? If you go by what the TV, magazines and most social medias say the "healthy" girl/guy is just a skinny, smiling person that looks blissfully unaware and is dressed impeccably. So what is it really? Does being healthy mean that you don't have any symptoms of illness? If you can eat whatever you want and still fit into those size 2 Levi's are you healthy? If you do meatless Monday are you a healthy person? What about if you go to the gym several days a week but you eat packaged, processed, chemical laden foods and of course still fit in those size two's? What if you do a juice cleanse?  What if...??? I could go on and on. This is an issue I've thought about extensively. And for obvious reasons I really, REALLY want to be healthy! So what is health? And how do you get it? 

On the road to wellness I've learned more than a few things about health and having a healthy body that functions properly. I've learned a lot about food as well. I'm not a doctor or a certified nutritionist of any kind. I'm just a person that's been so sick for so long that I've become borderline obsessed with figuring out what I can do and how I can, BE healthy. Can I heal myself? 

Hippocrates said "Let food be thy medicine and medicine be thy food."  Doctors still repeat the Hippocratic oath to this day.  However,  western medicine had strayed so far from food, nutrition and feeding the body to allow it to do what it was designed to do, heal.  Today it's all about the "magic pill."  It's the quick-fix mentality.  It's big pharma turning the healthcare system into a corporation.  Simply put, it's all about money.  It's sad.  There's no money in healthy people.  There's no money in dead people either.  (Unless of course you're talking to a funeral director.)  The money is in keeping unaware people just sick enough to need all those medications.  Think about it.  Seriously, there was an ad for opiate induced constipation during the super bowl.  THE SUPER BOWL! The most expensive time slots available for television advertising! And instead of ads focused on eating right and exercising the time was used to let us all know to "ask your doctor" about this great new drug.  I mean, there's a drug for the "jimmy leg." I think they call it "restless leg syndrome."  Have you ever bothered to listen to the long list of side effects to these drugs? Wow! 

Once I was standing at the desk in my GI doctor's office waiting to schedule my next appointment.  And standing next to me was a pharmaceutical rep talking to one of the other doctors in the practice.  And I heard him say something to the affect of  "...it doesn't cross the blood-brain barrier... there is a slight risk of death but..."  And like verbal diarrhea (pun not intended) I said "Well, you might be dead but at least your stomach won't hurt anymore!"  Then I kind of giggled because I could not believe that came flying out of my mouth.  The medical assistant looked at me smirked and said "Wow! You really caught on to that pretty fast."  Then the pharma rep turned to me and I could tell that my comment angered him, and he said "Believe me, some of these patients wish they were dead!"  My response? "Believe me sir, you have absolutely no idea who you are talking to!  You are literally preaching to the choir!"  He turned bright red.  My hope is that maybe, just maybe he will think about what he is doing.  I hope. 

Now, do not misunderstand me.  I am not 100% against medication.  Just like I am not 100% against doctors and hospitals.  Like my first homeopathic doctor told me, there are emergency rooms for a reason.  Good reason.  Believe me when I say that as much as I despise going to the hospital, when the pain is so bad that I have trouble breathing and have been consumed by tears, I am beyond grateful for the hospital AND the medications contained in it.  There are some life saving medications and definitely life saving surgeries and procedures.  I wouldn't be here if it wasn't for the emergency surgery I had when I was 20 years old.  My intestine was completely blocked and on the verge of bursting.  It would have killed me.  So I am grateful and I have first had experience with the almost miraculous abilities of western medicine.  I am all for going to the hospital in this kind of situation.  With that being said I go back to my original point, western medicine has come so far from where it started. 

A lot of these modern conditions, autoimmune diseases and their symptoms can be controlled by diet and exercise.  No pills needed.  And no terrible side effects or death to achieve optimum health. 


So, what is health?  Honestly, I think the answer will vary person to person.  After all, every BODY is different.  My definition changes day to day with one constant... I just want to feel better!  I'm still healing.  I haven't been able to reach remission in almost seven years.  I've had four surgeries in those seven years, one of them almost killed me.  I've been rushed to the hospital in an ambulance for an allergic reaction to a medication.  I couldn't breathe and my partner had to call 911.  Did I mention that I was only home from the hospital for less than 24 hours when that happened?  Anyway, I've been through a lot with this Crohn's disease.  This journey started 22 years ago and will continue on regardless of what I do.  As of now there is no real "cure."  So, I continue to search, read books and articles, anything I can get my hands on.  I watch documentaries.  I ask questions.  I feed my body good food from the earth.  I don't just see a commercial and ask my doctor for a pill to "fix" me. Let food be thy medicine, right?!
I am gathering as much information as I possibly can to figure out how I can achieve optimum health; AKA feel better. 


How do you feel? Healthy?

What's in your medicine cabinet?
What's in your refrigerator?

Prisoner-Of-War

Somewhere along the timeline I stopped imagining my life...
When I lived in Pittsburgh, while on my Florida hiatus, I would constantly visualize my life and how I wanted it to be.  Somewhere during all this Crohn's-hospital-sickness-life-stealing bullshit I just became blah.  I completely stopped.  I didn't just stop visualizing, but in a way I guess I stopped even thinking about my life in any capacity.  All I could do is just do right now.  And I don't mean "right now" in the Zen "Be Here Now" be present way----- But like, I stopped thinking I even had a future.  Basically, I just STOPPED.
Time became irrelevant, it didn't exist...like when you are in such excruciating pain and ten seconds LITERALLY feels like an hour.  I came to a complete and utter stand still...
 

And years, YEARS have gone by and I have begun to PETRIFY. 

When I was in Pittsburgh I used to visualize how my life would be and how I would decorate my apartment.  I wanted a deep blue couch (I still want one).  And I would think about going to the beach and having a writing career…etc., etc.  And then, I got sick.  And for awhile I kept dreaming.  I mean, it worked before.  I imagined a life and what I wanted---above all else I just wanted to be in Florida.  So, I worked my but off and

I MADE IT HAPPEN.

When I finally got here and Mark and I were back together and he was enjoying the success of his new business adventure, we were both healthy and in great shape.  I had Ziggy and the car I imagined and I was living just three blocks from the ocean…

It was as close to PERFECTION as my life had been… Then

BOOM!

A slow and

      Steady

          Decline

    Toward

                 An

                  Utter

                       Stand

                          Still

                               Inside

                            A

                      Giant

                              Heaping

                                   Pile

                                        Of

                               SHIT.

I guess there are multiple reasons for my petrification.  But one main one—CROHN’S.
When your body fails you, it’s the strangest feeling.  Especially when you are young.  And, if you do NOT have your health, you simply and quite literally CANNOT and do Not have ANYTHING.

                                                    PERIOD.

And strange things begin to happen when you live alone in hospital rooms and alone in your house.  My mind started to atrophy.  I pushed people away and others stopped calling because they didn't understand why I always said I couldn’t go anywhere or do anything.  Unless you’ve been chronically ill you simply DON’T GET IT.

                                                                                                                         PERIOD.

Sadness becomes anger.
Anger becomes sadness.
Sadness turns into apathy.
Apathy evolves back into
An anger and sadness cocktail
That tastes like a whiskey sour
With a bitterness chaser
And a side of Shut The Fuck Up!
Because I can’t decide what’s more annoying…
You and your pseudo concern
Or me feeling like shit for the umpteenth day in a row?

OR/THEN

 Feeling absolutely NOTHING

                               EXCEPT THE

                                STABBING

                                  DEATH

                                        PAIN

                                       IN

                                         MY

                                                 STOMACH…

AND

The long, dark, blank stare sets in and now nothing at all matters in the slightest bit.

Emptier than empty… I’ve entered into the NEGATIVE…

So, as if on auto-pilot I drive to doctor appointments and then head back to the couch (Not the blue one of my dreams).  I answer my mom’s text messages.  I run back and forth to the bathroom, put my heating pad on my pain infested stomach and I stare.  Empty.  Still.  So still. 

Tears drip down my face a lot of the time.  But still, here I sit.
The time keeps ticking away.  With every tick of the clock I miss my life.
Petrified, I do not move
I only lose the tiny bits of life left inside of me.
I exist on a plane of my own
Alone.
There are only concepts here

NOTHING

Is

             ACTUALLY ALIVE

I           JUST

      EXIST…

I’m breathing

But it feels as though this oxygen is just as supporting of the Crohn’s pain
That has taken me hostage.
I am a prisoner-of-war.
Breath is the equivalent of a bullet.
Things necessary to keep my heart pumping
Only feed the enemy.
I am at war with myself.
My intestines are Hiroshima
And the white blood cell soldiers sent in to aide
Are smothering each other.
It’s not safe here.
But you can’t escape your own body.

WAIT…

                                                                       (CAN I?)

WHAT?                                                               (THE FUCK)

Like I said, strange things begin to happen…

The loneliness is my companion.
My blank stare, deep.
And my pain… continuous…

But another strange occurrence…

Today I thought about that deep blue couch.
Somewhere between my morning coffee and more tears
Somewhere between Starbucks and streams down my face---
In popped the vision and it reminded me that there can be hope if I CHOOSE to see it.
If I decide to keep dreaming
If I decide that I want more
If I choose to believe that there is possibility… Well, shiiiiiiitttttt---

Maybe, just maybe there is…

Yes, my body STILL is failing me.
Yes, Crohn’s may be disabling my ability to do a lot of stuff.
But I can still dream and hope and pray and try hard to heal
My body may be still but my brain doesn’t have to be, right?!?!?!
I’ve been thinking a lot about perspective.
And it may seem as though I need to change mine.
I need to “un-petrify” if that’s even a word.

TIME TO GET MOVING!

I’m about to set this couch on fire

And replace it with the deep blue one from my dreams.

ALTHOUGH,

 Once I do that it will be purely for decoration.

'Cause once I take back my life and become an ex-prisoner-of-war I’m not sitting around to stare

NO MORE.

 PERIOD.

"Reality Used To Be A Friend of Mine"

A moment captured.  About a week ago I spent another six days in the hospital.  This was a little over four weeks after my last nine day stint.  My eyes cloudy.  You can see the tubing from the PICC line in my right arm.  After all these years my veins don't work.  Literally, my veins cannot support an IV.  And it usually takes multiple people, multiple attempts to even find a vein that will work for a short amount of time.  (This is a topic that I plan to go into great detail on in the future) I was going to post some of the actual journal entries from this particular hospital stay but they're kind of all over the place.  And like I said, I am severely private, so this whole sharing thing is VERY outside of my comfort zone.  Although, I don't know much about "comfort" anymore.  I guess that's why I finally decided to do this...
     So, I begin with this glassy-eyed sad photo of blinds drawn and palm trees in the distance.  I can't decide how I feel about the palm trees.  They remind me of the beach and being happy and healthy playing in the sun.  So, are they taunting me? Are those trees mocking my "old life"...You know, the life where I was happy and healthy and didn't turn my back...? Or are those trees there to remind me of that happiness and the hope of returning to a life where I am happy and healthy? Perspective.  Mother Fucker. 

Letting Go...

I've been secretly documenting my 21 year battle with Crohn's disease.  It may be time to share some of it...?  If I can help someone than all of this suffering will begin to change form. It could turn into something useful instead of just ruining what life I have left.  It's frightening to be so vulnerable.  If you scroll through any of your social media feeds 99% of it is the positive, happy, fakeness that people want others to believe is their reality.  Well, let's be honest for a moment, NO ONE has a happily-ever-after life.  No one.  So with the risk of sounding like a whiner or a "why me" asshole I am going to attempt to put my ordeal out there.  Honestly, it's terrifying!  I am a SEVERELY private person! However, through all of this there has to be a purpose.  So maybe in putting it out there I will find what it is... And I know there are others like me barely holding on.  Maybe together we can do it... This is all I hope for...