Pain, Fatigue, Flare

Haven’t posted for a minute. I’ve been having a bit of a flare. Fatigue is a relentless thing. Pain is more than usual with bursts of time where I get that ‘Oh dear, this is not good’ feeling. The one that starts with a central ache that blossoms into a burning that reaches through your body; tentacles with spikes on the end. Radiating to my back, upward and out to my very edges. Anchoring and squeezing in. I can feel it gripping, settling for the long stay. Something so silly as standing in line to buy zip food storage bags I later realised we didn’t need. Grey and washed out, cold sweat, panic and dread. This is breaking into my every day boring things. I behaved like nothing’s wrong for the strangers at the store and my kids who are old enough to be mortified.

The sinking feeling when I remember how long it took to be rid of this pain before. I toughed it out without pain help and became bent inside. Pain became normal and warm and comfortable. The before times, before I was broken, when pain was really pain, suffering seen clearly by my minds eye, it took years of uncontrolled agony to become broken. I wonder if I can do it again. Pain unmanaged is the current fad the well impose upon the ill. Once I got my mind right-ish about pain I promised myself I would never suffer for the title of good, compliant patient. But its been a difficult, tentative relationship that I like to play off as resolved.

I keep behaving as though I’ve recovered from the last Urgent Care turned ER stay. I am concerned. I’ve lived in uncomfortable remission. Waiting for the other shoe to drop. Enjoying not having to take Crohn’s meds, trying to savor the health I feel like hoarding, if only I could.

I’m due to see my GI. I want to go. I don’t want to go. It’s complicated.

And so I’m kind to myself. I treated myself to a long overdue hair cut. Talking to my hairdresser about the book she’s reading and the sewing class she’s taking was refreshing and lovely. I’m re evaluating my life. Assessing what I’m doing to make sure my long term goals are on track. Decluttering to reduce stress. Staying invested in advocacy by learning new ways to share.

The After Burn

*Disclaimer:  Adult content and language.*

I think perhaps sometimes I share too much of the good.  Always push forward.  Always look for the light and fight your way there.  Fake it until you make it is something I have been doing since I was a pre teen.  As a person with Crohn’s Disease I find strength and comfort living in a way that negatively impacts my family, especially my children, as little as possible.  I feel powerful when I am able to make my life look effortless to everyone else.

parentingUnfortunately, my positive sharing has led others to believe my experience has been the Holy Grail of easy.  Well guess what, sometimes I go through things I don’t fully understand at the time.  Sometimes it takes a while to process my junk before I feel like sharing.  And sometimes my junk is so heavy and ugly that sharing feels like an unfair burden to put out into the world.

However, today I wanted to share with you about pain.  Not the normal pain ER docs see as drug seeking.  Or chronic pain we live with to the point where we’re really never sure where we fit on the 1 to 10 pain scale.  I’m talking about what happens when pain goes sideways and becomes something else entirely.

So I have my Permanent Ostomy Surgery  and everything goes swimmingly.  I’ve written about that before. (It’s really long)  Just days after procedure I’m home, home schooling my daughter, and loving on my wee son.  Life was on track.  I was walking around normal and physically better than expected, but a part of me was emotionally numb.  It was like stepping into a life that wasn’t mine.  Everyone else was the same but I no longer fit.  I felt foreign in my own life.  Impostor.  At the time I attributed it to this huge change I had undergone.  I gave myself slack and forgiveness for the learning curve I was going through.  I was being very understanding towards myself.  But still, I felt like I got off too easy.  I was getting away with something.

Being pain free after all those years, and surviving a near death overdose in the hospital was like finally being allowed to remove your hand from the flame.  It’s that immediate, jarring, lack of sensation.  I had been living pain for so long that its absence felt foreign and far too quiet.  I wasn’t giving myself constant pep talks of ‘breathe through it, it will pass, push through, you can do it’, because I didn’t need to.  In an odd way my inner compass felt too still.  I felt far too vacant inside without the pain I had grown accustomed to.  I didn’t know I had made friends with agony until it was no longer there.

Logically I knew that everything was the way it was supposed to be.  Still, I felt on guard and uneasy.  I realized I had never really been able to rest.  As in sit in a place, pain free, and really enjoy my surroundings.  And sleep.  God!  Sleep on a level I had not experienced in years.  I could actually sleep and wake rested.  But the peace and rest I craved so much at first felt unexpected.  I would wake up and be surprised at the length of time I had been out.  Defensive and wary.  Are you sure?  That many HOURS?!  It was an odd mix of disorienting lost time and surprise that I was actually able to do it.  I could sleep through the night.  And at the time that didn’t feel right at all.  This sleeping, pain free, resting thing.  I had been away from it for too long.

And if that wasn’t screwy enough, one day I was changing my gear, felt the sting of the Ostomy paste with its rush of pain…. and warmth.  Comfort.  Which was disorienting in that it was a magical mix of hurt like crazy and strangely soothing.  It was dizzying euphoria and fear.  Which threw me.  What the Hell was that?!!  I was the stranger looking back in the mirror, wild eyed and confused.  For a moment the hollow feeling was gone.  Oh Shit!  This is NOT right.

Much to my horror and curiosity I was bent by pain in a way I did not understand.  Pain felt good.  Really Good.  Like that loose body feeling after a massage.  I was no longer waiting for Crohn’s pain to come to endure against.  It was there in another form, and it had missed me.  And I felt Right for a moment because this is what I had needed and didn’t even know it.  The combination of this mis matched pair of experiences was unsettling.  It’s not supposed to work like this. I felt like a monster.  Well Shit!

It wasn’t physical health at all.  Physically I was doing better than my highest expectations.  Instead it was a slippery little thing that snuck in between the cracks and ambushed me when I least expected.  I didn’t know what this was called.  I had never heard of it before and I sure as hell wasn’t going to tell anyone about it.

painFrom danger to peace with no transition.  Emotionally like being forcefully thrown from the top of a building to the city below.  It wasn’t a purposeful choice; I was overtaken by it.  And incredibly ashamed for that weakness.

In my life I have been physically hurt in many ways.  Never was it comforting.  This new development freaked my frick out.  My job in life until then was to battle against pain, not secretly acknowledge it as relief.

I knew no way to help myself but to keep going.  In the opposite direction.  I poured myself into my life.  I overemphasized the things I knew in my mind were normal and good.  I focused on my family and parented the hell out of my children.  It felt like I was apologizing all the time.  I stayed away from pain and hated myself when it itched against the back of my brain.  It was a hard crawl.  I felt like an ass.  I felt betrayed by my own body again.  Was I a pain junkie?  Is that even a thing?  I was Pissed at Crohn’s Disease.  Again!  Haven’t I been through enough already?

I was so proud of myself all those years for shouldering the Crohn’s Disease pain largely unmanaged.  My doctors gave confirmations which bolstered my right thinking.  I told myself I was doing a great self service by avoiding stronger meds so at surgery time I had more pain management options.  I equated pain endured to accomplishments.  Even more so if, on the surface, I made it appear effortless to those around me.  In reality, the way I endured Crohn’s Disease pain turned into a trap.

As of today, years later, I have healed to the point where I still hazard an educated guess when it comes to the 1 to 10 pain scale.  Which has always been normal for me.  I am friends with pain in that I tolerate it quite well, but no longer miss it.  I used to miss it.  I feel appropriate levels of discomfort when injured.  I no longer feel like a monster, but do still carry a shade of regret and shame.  Regret that I know exactly how pain can twist and whisper soothing things to you, and if it happened then, will it happen again?

Laughter After Surgery

On this Monday I am taking it pretty easy. Resting and recovery are the only items on my schedule.

With that in mind I wanted to talk about laughter after surgery. Laughter on its own is fantastic. Laughing lifts the spirits and sparks that joyful part in us all.

But then again, not so great when laughing pulls at stitches. Last night my husband and I were watching a funny show and nearly got through without a hitch. That is until the very last scene where one of the main characters did something so funny that my Dearest and I were rolling with laughter.

He was euphoric with comedy humor and I was gripping my side in a combo of laughing at the hilarity and body protesting the pain. I was laughing at him, then next at myself as we erupted even more so together. The humor continued to unfold on screen feeding the howling frenzy of two people unable to look away from all that perfect acting. I tried not to laugh, which made the whole situation that much worse. Tears streaming down my face, I tried calm breathing which proved ineffective when in the grips of a full belly whopper. Think about lamaze, lamaze isn’t funny. Think about real estate, that’s not funny either. And then it built up again, chuckling at my other half as he was watching me in my blended state of hilarity and distress. The look on his face with those wide eyes and open mouth guffaw was priceless. We couldn’t help ourselves, we were hilarious. The mix of cramping, pulling, roiling abdominal muscle against stitches, torment and the play of emotions, both in the show and in ourselves, was its own twisted comedy.

Oh heavens, I really do love us.

And so today it’s no surprise I feel like I got sucker punched right in the belly. Blarg! Throughout the night I was diligent about pain meds and used a heat blanket which was heaven. Even still, today I am stiffer and slower than I’d like to be. Laughter ambushed my recovery and likely put me back a day or two in my road to wellness.



Even still, I keep thinking I really need to watch that episode over again when I’m fully recovered. And no more funny business until then.

I wonder if my Hubby is up for a good drama?

Painting Rainbows on Jagged Glass

You know what, I’ve been in a lot of pain lately.  Don’t get me wrong; I’m a pro at remaining calm and carrying on.  But wow it’s been difficult.  Someone noticed I wasn’t feeling well today and that was hard.  I thought I was doing a much better job of playing normal. Darn, darn, darn!

Pain, fatigue, lack of sleep, achy joints, clammy sweating during the night to wake up cold and in need of an insulating layer of beach towel as I’m too tired to change the bed and guilt and shame over the idea of waking my comfortably sleeping husband over repeated restlessness. I will close my eyes, I will shut down, I will open my eyes again with that sense of having having never rested. Whatever restoration I take in those moments is my fuel for the day. I walk around feeling like a wrung out rag with a job to do.

I get winded doing the simplest things. Breaking down processes to make them more achievable such as folding laundry, making dinner, even getting ready in the mornings is the only way to get them done. Y’all just need to calm down and be patient or help me out. Mommy needs a break for a minute.

It’s hard to balance what to share, how to share in a situation that is still evolving, and tell the truth without bringing you (or myself) down. A big part of my success at carrying on is minimizing my experience and pushing off that gravity. Move forward always. Coping by painting rainbows on jagged glass is my specialty. I’m simply trying to walk carefully through this rough patch without getting cut.

My liver levels are off. I have pain that kicks and stabs from within. I have difficulty keeping down food. I am jaundiced and really hoping no one else will notice. I am worried for my family. I’ve been this sick before and I hate that I’m here again. I’ve got a bucket of anxiety and it’s overflowing.

Of course someone could tell my normal was a big ol’ act put on for everyone else. My heart wasn’t in it.

All of you out there not feeling so great but killing it anyway totally Rock!

Crohn’s Pain ~The Deep End


It appears that my long season of wellness has ended.  Perhaps it is the cold and flu season or is it just my time.  No matter, the result is the same.  I am in a season of illness.  My Crohn’s is having a hay day and taking every excuse to flare.  And with that I share with you some of the events that I experienced over Christmas break.  I focus on the subject of pain because currently there is a campaign out there that states that IBD is all about going to the bathroom a lot.  To be true, for me at least, some of it is.  However, the majority of IBD Crohn’s is comprised of other experiences.  So I highlight one day for you here.

Pain  ~What a tiny little word.  Medicine tries to pin you down to a scale of one to ten.  But how can you when it is this:

The look on his face when he saw me this morning.  I knew I was not feeling well, but it got out of hand so quickly.  A cold, it was just a cold.  But then the vomiting and diarrhea started and my Crohn’s flared.    ”You look like a corpse.” His eyes searching mine, examining my face, his eyes filled with fear and concern. “You have dark eyes that are sunken in.  I have never seen you this sick.”

I see the pain and fear in my husband s guarded eyes.  Carefully crafted expressions holding up confidence and hiding his fear.  I know I am hurting him.  I can feel his compassion for me.  I have been too weak to get out of bed and don’t realize how sick I really am.  I have not slept well in over a week.  It has been nonstop vomit and diarrhea for four days.  My Ostomy output is violent as it fills the bag so quickly I can actually see the geyser of fluid as it changes the shape of my bag, filling it in one huge surge.  I am exhausted.  Loosing fluids faster than I can take it in.  I insist I am fine and promise to call if I need to go to the clinic.  “Are you sure?” Uncertain, my husband feeds our children then heads to work with a reminder about how fast he could be home if needed.

I lay in bed as long as I can.  I pretend I am well and read stories to my children.  They bring me their favorites and we read more until I cannot avoid getting up any longer.  I have to use the bathroom.  I am covered in sweat and the hair that I have pulled up into a pony tail smells of vomit.  I take a shower and it is exhausting.  I can’t stand through the process, but sit on the stall floor to rinse my hair.  At this point I know I am going to the hospital.  I can feel my heart pounding and it takes all my efforts to towel off.   The sudden cold seeps into me, making my joints ache as I shiver.  I am so weak and in pain I am unable to stand straight.  My daughter has noticed that I am not well.  So she doesn’t see my skeletal body, I ask her to please pick me out a cool shirt and grab the phone.  While she searches I am able to step out of the shower and make myself more decent.  I don’t want for her to see me this way.

My sweet husband comes home and sees with one look that I am in distress.  I am worse off now than when he left me.  With my children near I keep my discomfort to myself as best I can.  I would never want for my kids to blame themselves for something that the malicious Crohn’s has caused.  He calmly ushers our children to the car.  ‘Mama needs to go for a ride to the doctor and we are going to take her there.’  After securing them in safety seats he comes back and almost carries me down the stairs.  He is so gentle and careful as if I were breakable. 

Harsh hospital lights shine too brightly as I lie limp and weak on the gurney.  The ride here has taken its toll.  My hip bones press hardest against the coarse plastic loosely covered by a thin sheet. My boney knees ache, banging together as I struggle to find a more comfortable position.  Too emaciated to find purchase, the attempt sends a dizzying swell of the sound of my heart beat and the inhale and exhale of my own lungs through ringing ears at a high volume that muffles all other sounds.  I am stilled by the knowledge that I simply cannot.

Hot, sharp, piercing, twisted up agony steals my breath and quickens my heart.  Squeezing razor edged suffering.  Doubled over, gripping my abdomen, fighting off barbed wire misery so strong it’s nauseating. 

Vomiting is a body convulsing, shaking, frantic gripping, clammy, violent release of warm bile and blood.  Reflexive stomach muscles ache with over use.  Curled up around myself, sodden clothes with fever sweat, stringy hair and putrid breath. The smell of death wafts up in rancid vapor streams and nauseates anew, inspiring another accounting of my fetid contents.  Loosing vital fluids, spilling out my life into a cuffed, graduated bag to be measured and documented by analytical and distant nurses.  They can see how sick I am and are trying not to get attached because the depth of this pain will kill them too. 

Eyes sunken in from dehydration look upon my children with concentrated love.  I gaze memorizing their angel faces.  Warm pink cheeks, and wide, deep brown eyes, scared, vulnerable.  They see everything from innocent perspective.   My guilt whispers, ‘Your sickness is hurting them.  They will grow up and remember this.’  The oldest is fearful I will die.  I see it cross her face as she tries to be brave- like me, like her father.  Me, looking like hell, but trying to reassure her.  Raspy hoarse voice with earnest ‘I LOVE YOUs’ I pray my wee ones will remember.  I well up but refuse to join her tears.  Everyone is worried but putting on their best faces.  Sorrow eyes pretending cheerfulness; acting as if this is just a passing thing.  Saying it because that is what I need, hope, and will give all my energy toward.   The tears she is unable to hold back as my little family leaves me in the hospital for the night feel like a spike in the heart.  Right then I hate Crohn’s.  I do not belong here in the hospital when I should be home with my children.  Anger and injustice boil in me.  I want to chase down the hall to catch up so we can all go home together.  The IV in my arm and the inability to get out of bed is a cold reminder as the tears I had been holding back flow.

In truth my greatest fear is leaving them because of this wretched thief illness.  Crohn’s –  I feel I am living it right now. 

Horror.  Great and looming the idea of losing my life, my family, my children to Crohn’s.  Holding hands with death as lightly as I can, my Spirits head always turned away refusing to see.  Willing myself to embrace the suffering and stay.  But still I feel the possibility of death is here.  I got too sick this time.    Please pass me by.  Not today, please pass me by.  I can go breath by breath, endure and stay.   

When the fingertips of searing torture reach through my body pulling and pulsing until I am weak and hollow I feel scared.  I feel sad, weary and broken from a life rubbed raw with the cruelty of Crohn’s that scraped across it.  Humiliated and vulnerable with the nakedness of my sufferings exposure.  I won’t cry in front of them.  It would be too awful.  Like admitting my own defeat.

Today was an eight.