Just East of Normal

Crohnically Ill, Uncategorized

“You’re showing signs of remission.”

The words every patient wants to hear… until they’re followed with:

“We think your symptoms are due to your post-surgical anatomy. Consider this your new normal.”

Awesome. So I can’t eat like a normal person. I can’t exercise like a normal person. I can’t even perform a stream of normal daily tasks like a normal person.

Nope.

My normal is just east of normal. Better, but not quite there. And not only will I never get there, I should just stop trying.

Ouch.

Mega ouch.

But then I slap myself upside the head.

I’m ALIVE.

I may feel like several cement trucks ran me over when I get up in the mornings, and I may experience several severe bouts of nausea throughout the day (I might even hurl), and I just may have a severe stomach ache, one that makes me look pregnant and doubles me over, but I am still alive. I have the privilege of groaning myself awake every morning. I’m granted the opportunity to trudge through each day, and I have a beautiful family to come home to each night, no matter how much we drive each other crazy.

I’m living this thing called life, and not everyone gets to.

I almost didn’t.

If east of normal is what I’ve been dealt, I’ll accept it graciously. It allows me to relish each day I get, pains and all, to the fullest. I will find positives in everything, no matter how scarce they seem. Life is meant to be lived and loved, and I aim to do that, no matter how bad it all seems.

Will you?

 

#power

How Coach Saved Me

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“No pain, no gain!”

“It’s not about who’s fastest. It’s about who wants it more.”

“Winning the race is all in here,” says Coach, placing his hand on my head.

No, he’s not pumping me up for a race. It’s a regular, Monday practice of 16 laps. 16 laps at a grueling pace, with only a few seconds of rest in between.

“Okay, next lap in five, four, three-”

We start jogging to the start line; this way we can start our lap at full speed.

Why do I have to do this again? my head groans. Fatigue, nausea, and pain threaten to overwhelm me, and this lap hasn’t even started yet.

“Two, one, go!”

My legs work their way around the track, matching my partner in crime stride for stride. We round the corner, coming to the back stretch of the track. My mind screams at me, begging me to stop. Just stop running, throw myself into the grass, and let this be over.

No.

I focus my eyes on some trees beyond the track, and use tunnel vision to melt pain into the background.

Pain is the body’s emergency system, alarming you that something is wrong. Well this is training, and nothing is wrong. Instead, pain is a beast you overcome, and the battle forges you into someone strong and unstoppable.

With my victory over pain and some gold medals later, this school of thought develops a double edge sword I am unaware of. Pride is the root of one’s destruction.

Senior year. My times slow down. I gain weight. I’m tired all the time. My stomach hurts all the time. Not for one second do I think something is wrong with my body. No, this new, invisible monster will be defeated, just as I’ve beaten pain all the other times. I only have to be mentally strong enough. How wrong I was…

I do not win a gold medal. I give the silver to the other runner before the race even starts, and I know it. Leaving with a bronze, I never feel more ashamed. I don’t lose. I don’t quit. And today, I did both.

I go to a school where I know have the anti-Coach. Everything my high school coach was- inspirational, positive, a life force to be reckoned with, despite his five foot four height- my college Coach is not. Lean, tall, and incredibly mean. Despite the warnings to his character, I proudly assume I do not need a good coach to be successful in college. I can do this on my own.

The high miles and grueling training schedule give me knee problems. I’m still always exhausted, and I don’t know why. If I can just be stronger, better, and less weak, I can do this. I’m running to the bathroom in between laps. College also brings on a slew of emotional issues, as I realize outside of my small little world back home, I have no idea who I am. Because of this, I cling onto track. Track is the only thing left of my identity.

My knee doesn’t improve. I’m suffering in ways I don’t understand, and tunnel vision doesn’t wipe it away. This invisible monster has found root inside and taken over.

“You can either have surgery, or reduce your training in order to let this heal on its own.”

Somewhere deep inside screams that this is it. This is the out you need. Take it!

Normally I mull over major decisions for days to weeks. I give this only a second’s thought, because I can’t belabor the fact I’m about to do the one thing I never thought I would do- quit.

After giving Coach my resignation, I allow myself to cry on the walk home, but that’s it. I won’t think about track again.

I have to find out who I am on my own now. I don’t know what’s taking over me, but I will defeat it, and it will be on my terms.

Instead of 7+ miles a day, I run 4. I still need the bathroom multiple times during one run. My stomach screams in pain, but onward I go. Nothing will stop me.

On one unfortunate long distance workout, I have an accident. I cry on the walk home, because now I realize I’ve hit a limit. I can’t even do the one thing I know how to do. Can I really not run anymore?

From there it only gets worse. I go the bathroom twenty plus times a day. I visit the Health Center at school, but they test me for parasites and put me on antibiotics. This goes on for months. I hole up in my studio apartment. I’ve gone from living with close friends to living completely alone.

When I go to the bathroom, there’s blood. I can’t go to class. Work sends me home as there is no point in keeping me when I spend all the hours in the toilet. I go to the Health Center over and over, begging them to find out what’s wrong.

My mom calls. She’s spoken to my brother who’s in medical school, and he thinks it’s Crohn’s Disease. What the heck is Crohn’s Disease? She makes an appointment for a specialist, while I do a Google search.

Three things I know after my scan of the Internet:

  1. It’s life long
  2. It’s treatable
  3. People with Crohn’s lead normal, happy lives.

The desire to laugh and cry at once overwhelm me. THIS is the invisible beast I’ve been battling! I have a health condition! So all I need is a pill that I’ll take everyday, and everything will be okay! Now that I know who the enemy is, I can fight this, and soon this will all be over.

Little did I know, the battle had just begun…

It’s not one pill a day, it’s eight. And I don’t get better as soon as I take them. The doctor says it will take up to six months to start seeing improvement. Six months come and go, and I’m not better. I use the bathroom less, but the pain and fatigue still crush me. I thought I could use tunnel vision on this disease and get better right away. The fact I can’t defeat it so easily throws me into an even deeper pit of depression.

My mom suggests we go to a new doctor. He doesn’t play around. He gives me the harder drugs right away. Instead of pills, I have shots. For two years, the shots work. For two years, I get to remember what “normal” feels like. I realize I’m not weak. Everything I had gone through finally made sense. I no longer hated myself for quitting. In fact, learning to let go can sometimes be the smartest choice of all.

Two years comes to an end, and the fatigue creeps back in. This monster works with the upmost stealth, and a bad day turns into a bad week. The next could be better, tricking me into thinking maybe I just had a virus, or was over stressed. Pain comes and goes. I miss my six month check up because of work, as substitutes who speak French aren’t just sitting around waiting to take my place. I work for a private company, not a public school.

At some point I realize it hurts to lift my leg just to put on pants. Any amount of pressure on my lower abdomen leaves me in tears. When kids wrap their arms around my waist, I’m biting back the pain and nausea. While teaching class, I have to excuse myself to throw up in the bathroom.

I tell my boss I have to take a day to see my doctor. I don’t care that there isn’t a sub. They work it out for me, and down to Charleston I go.

The look on my doctor’s face doesn’t bring me any relief. This doesn’t leave me thinking “oh, everything is fine, just need to change around some meds.” Nope. He puts me on steroids, but lets me know surgery is a strong possibility.

I groan. I take the steroids anyway, but I know where I’m headed.

“Don’t worry. It’s a 3 to 4 day hospital stay max, and you’ll be out before you know it.”

As they prep my discharge papers, I’m sunk into delirium, pain turning my world fuzzy and mute.

“Don’t worry,” says some resident doctor. “You’ll be fine. This will be over soon.”

How wrong he was!

I wake up to a tearful husband and parents.

“What happened?”

How do you tell a drugged person they almost died? How do you mention that they now have a bit of intestine protruding from their stomach?

It takes over a week to come back to a state of awareness. I’m fed through a central IV. The tube up my nose drives me mad. My lips are cracked from no water. Leaving my bed requires breaking through a wall of pain. I lose weight at a rapid pace, and I shiver all the time from cold. I want to leave. I want to be home with my family.

“How can I get out of here?” I ask the doctors during their rounds.

“Well, we need to get you eating. And in order to do that your digestive system needs to start working. The best way to kick start your digestive system is to walk as much as possible.”

Bingo! THAT I can do!

It’s just like laps around a track.

Just like that, Coach saves me.

Getting out of bed hurts like hell, but in my mind Coach is yelling at me to get up anyway. “No brain, no pain!”

I get out of bed, and that was the hardest part!

Clutching my IV pole, I make my way down the hall. I reach the end and turn back. I’ll have to work my way up to full laps, but this, I can do.

I put myself on a schedule (well, as best a schedule one can do while in hospital and on heavy painkillers). I keep walking. Soon I’m doing full laps. Finally, after sixteen days, I’m out of there.

And yet, I find myself right back in.

Complication after complication after complication.

I live this nightmare for a full three months. And even after the hospital part is over, the nightmare is not.

I still have to get my strength back.

And I have a dependence on painkillers to break.

But this- beating pain- I can do. I can wrap my mind around it. I know exactly what I’m dealing with now.

I’m told not to stop painkillers cold turkey and am given a step-down program. I quit in half the time allotted.

I get better.

And then I get worse again.

I’m on new medicine, and I have a new doctor. I’m still not in remission. My new anatomy from surgeries makes digestion… complicated, so I stick to low residue foods.

I now know I will always be fighting this pain. I’m always stuck with this disease. But I’m not too proud to admit when my body is failing. And I’m not too weak to fight back. I will never stop fighting.

I have Coach to thank for that.

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Charleston, Racism, and Mental Health

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This is not a Crohn’s post.

Nor is this about a piece of cloth.

Because cloth does not breed hate.

People do.

Cloth does not cause mental instability.

A person’s chemical composition does.

And dammit, it’s high time we discussed this!

Charleston is my hometown. I was born and raised there. My grandmother grew up on rainbow road. This city is in my blood, my heritage, and I will always love it more than any other city in the world.

The tragedy that occurred this week is heartbreaking.

The display of unity, love, and forgiveness to follow heals all wounds.

I love that the victims’ families and the rest of the Charleston can bind together in the face of such ruthless hate and say “I forgive you.”

I don’t care who you are. That’s one powerful message.

Where other cities riot, we hold hands.

Can you get more amazing than that?

And yet, as I passed by the State House this weekend, I witnessed a throng of angry protesters.

I get the protest. Yes, take it down.

But will doing so reverse hate?

Does fabric eliminate mental illness?

Let’s face it, America. Someone who shoots up a church of people is mentally ill. No bones about it. Something is misfiring in his or her brain, and he or she needs help.

I would say the same for many acts of terror, not just this “white” guy.

Not all acts are, and mental illness is no scape goat, but a lot people sitting in our SC maximum security prison needed help a long time ago, before getting put behind bars.

Since when do we ignore this?

Since when do we treat mental health like the imaginary folklore of Tolkein or Rowling?

Because mental health is very, very real.

It’s shooting up our churches.

It’s bombing our buildings.

And it needs to be recognized, at an early stage, and properly treated.

Hate is bred, not born.

We should raise our children to love and respect one another.

As a teacher in 2015, I feel that is the case. I teach in the district he graduated from, and I know we do NOT condone his philosophy or behavior.

But what about at home? What are parents, aunts, and uncles teaching our children? Are we teaching love and acceptance in our communities?

But this takes more than hatred. This takes being sick in the head. He needed help, much sooner than June 2015. Someone should have identified this and gotten him professional aid.

Where are we with mental health, America? How are we going to change this? There are racists who don’t shoot up public events. There are racists who just sit in their own, quiet hate. And there are people who load a gun and press down on the trigger, multiple times.

Those people are sick. And they need our help. When will we recognize this? When will we do something about it? This can prevent the next tragedy. This, along with how we raise our children, can prevent the next terrorist act.

This needs to be our nation’s current conversation. What else will we do to prevent the terrorist act? Because let me tell you, it doesn’t stop at taking down a flag. It shouldn’t,

*Let me be clear. Mental health is not a cop out here. It’s not a scape goat. How we raise our kids, and how we treat mental illness is important. That will breed the real change in our country.

#power

13 Scopes Before 30

Crohnically Ill

“Oh honey, if I give you the generic, you don’t get flavor packets.”

“It’s fine. I usually mix it with Sprite anyway.”

“Oh my, have you done these quite a bit?”

“This is number thirteen.”

Lucky number 13… and I’m not even 30!

So since I’ve been around the block with colonoscopies, and it’s IBD awareness month, let me fill you in on my tricks and routines for surviving this not-so-pleasant procedure.

Two Days Before:

Eat light on this day. The less you have to cleanse out of your system, the easier prep time is. Since I’ve been living off protein shakes and one small meal a day, I decided to splurge with my “last meal” and eat a little more than usual. I even threw in some broccoli, the first veggie I’ve touched in ages! However, as I’m not used to large meals, I wrapped up the rest in hopes of finishing before bed. Instead, I passed out. #lame

last meal

One Day Before:

It’s clear liquids time! You may drink any liquid you can see through, but avoid red or orange drinks, as the dye can coat the lining of the intestines, fudging your results. I prefer to live off Sprite and water, but sometimes jello, broth, or gatorades can feel more filling, so it all depends on your preference. I go to work, as I prefer to be distracted instead of sitting at home feeling hungry. But, since my hospital is two hours away, I do have to take off, rush down there, and start drinking prep by 6 pm the day before. Keep some Zofran on hand (dissolvable kind), if you can, to help stave off nausea.

supplies

Prep Time:

Now for the fun part! If you are one of the lucky ones who gets to drink the Gatorade + Miralax & Ducolax pills combo, good for you. If you have to drink the gallon of prep like the rest of us, here are some tips. The instructions read to drink one eight ounce glass every 10-15 minutes over the next several hours. You are supposed to finish up by 10 pm, but for me, that’s not feasible. After about two hours I get extremely nauseated, and sometimes it will all come right back up, which you DO NOT want to happen! If you start feeling sick, it’s better to take it slow. This last time I took an hour break at the halfway mark, then sipped slowly until it was all gone. I finished up around midnight. Pay attention to when your appointment time is, though. If you are booked for first thing in the morning, and you fear it might take you a while to drink the prep, it’s okay to start a little earlier than the given time. This way the prep clears out your system before your scope. Also, do mix with Sprite, or apple juice, or something, because otherwise the prep is horrible. Seriously, I pour a glass 3/4 the way full, then top it off with Sprite. It is sooooo much easier to sip on! I don’t even need a “chaser” to get the taste out of my mouth anymore.

#power

Once the prep is all gone, and your “stool” (more like pee from your butt) comes out clear (by clear I mean a pale yellow), then you are all set! Get some sleep!

Procedure Day:

lets do this

You made it through the hard part! Now for the easy part. I’m sure it’s common knowledge, but have someone take you there, so they can bring you home. There will be a plethora of medical staff coming in and out, from anesthesiology to your GI team, along with nurses coming to ask you a mile long list of questions and to start your IV. If you’re a girl, hold that pee in until you get to the hospital and ask to take your pregnancy test STAT! This moves things along a lot quicker, as the nurse can crank that out and anesthesiology can get you checked off. Then, you wait. Bring something to do, like a fully charged phone or a magazine, because sometimes the staff is behind on schedule.

They will wheel you back to the room, start the sedation process, and hang out by your bedside chatting you up. If you’re like me, you’ll fight the sleepiness, rambling on about work or kids and asking questions and answering questions and…. saying… something… about…

Wake Up!

It’s all done! Keep blinking those eyes open. Ask the nurse for some Ginger Ale. Sit yourself up. It’s hard fighting off that heavy blanket of sleep, but I’ve found when I’m aware I need to wake up, the fog starts to clear. It takes a little while. The anesthesiologist came in to chat me up, and I wanted to text my husband about it, but the result was absolute rubbish. I have to laugh as I know what I was trying to say, but instead this came out…

text talk

Yeah…

It’s okay, within the next twenty minutes I was texting coherently.

Still when the GI came in to give me my proper results, it took a lot of me asking the same questions over and over and focusing really hard on his answers to let it sink in. Have your friend take notes for you, in case you do forget.

Rest up for the rest of the day! You earned it.

cheers

Why Some Of The Press My Blog Received Really Hurt

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Awesome post written by a strong, new ostomate, who won’t let media or stigma get her down.

It’s been 4 months since I had my ileostomy surgery. And it’s been a tough four months, mentally. I know I come across as being extremely confident with my stoma and I haven’t let it affect my day to day life, but in some cases, I feel it’s isolated me and there have been occasions where I just wish the whole thing hadn’t happened. These reasons aren’t really to do with my stoma either, but to do with how it’s effected my working environment and my relationships with people.

Before I had my surgery, I was working in media and spent my days in an office editing photos and dealing with press. It was fun – I’d always wanted to be a journalist and although I have written for a few publications, I hadn’t actually had any paid writing work. This job for me was a step up the ladder…

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My Face on Things

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Max Wirestone

Of all the strange occurrences that occur on the road to publication, the one that I can least wrap my head around is that apparently my face is going to be printed on physical items.  ie books. This is not a thing that should be happening in the real world. This is the sort of development that belongs in a YA dystopia.

Also, it feels like my face should lower the market value of the objects it is imprinted upon.

“How much is this book,” asks a potential customer, turning it over and observing my scowling visage.

“20 dollars even,” answers the bookseller. “You should get it! It’s an excellent read, and was once described by Devi Pillai as ‘fucking hilarous.'”

“Maybe,” says the costumer, considering the abyss that is my hairline. “How much is one without the author photo?”

“$26.99.”

“Just this once, let’s go with the upsell.”

And…

View original post 357 more words

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No Fear

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Living with Crohn’s can emit a number of fears.

Will I ever get better?

Will I always feel like this?

Will I be around for my loved ones?

Will I have another obstruction or worse, a perforation?

Will I die?

It’s easy to crack under the stress of this disease, especially if it’s difficult to manage, and one’s support net isn’t that strong. Even one’s brain chemistry can predispose them to a variety of mental health issues, to include anxiety and depression.

So, I must say, I certainly don’t judge anyone who struggles with fear, because I know it. I spent hours sat in hospital waiting for a procedure the doctors told me were highly likely to have serious repercussions. I had just had two surgeries, one in an emergency setting, lost twenty pounds, and had barely regained my strength. Could my body take another mishap? As hours ticked by, the head games were painful.

However, I do value facing one’s fears head on. The way I see it, Crohn’s may be able to control my body, but it isn’t allowed to control my mind. I won’t let it cripple me in fear, leaving me depressed or in a constant state of anxiety, because to me, that is no way to live.

Mental illness is a very real issue, and those who struggle with it should be medically treated. I firmly believe that, so I don’t wish to speak for those who suffer from mental illness. I speak only for myself.

I do encourage you, fellow crohnie, to face your fears. It’s easy for this disease to wear down on your mind. To be honest, these last few months have been playing at me, and I haven’t been mentally facing my inner fears. But today was a good day- the first one in a while, and at the end of it I’m realizing I need to buck myself back up and face the pain and anxiety head on. Worrying about if this treatment will work or not does nothing. Stressing if I will ever achieve remission does not get me there. So yes, there’s plenty of pain and discomfort to be had, but I can have it with a positive attitude, enjoying what I can of the world around me. There in lies the true victory.

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The Dark Side of Crohn’s

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What you see is not what’s happening. I put on a positive face. I post pictures of me grinning from ear to ear while awaiting the latest colonoscopy, or hanging out in a hospital. I cheer others on to keep fighting, never give up, and enjoy life to the fullest. Everyone says “You look so great!” “You’re so brave and strong!”

I don’t feel brave.

I don’t feel strong.

I just refuse to show it.

Well, here I am, unable to sleep, in pain with nothing to relieve it, and I’m tired of hiding. Guess what, world? This SUCKS! I may smile, and say “it’s okay,” and act all positive, but you don’t see me when I’m alone. When there’s no need for pretense or social norms, I crawl up in bed and cry. Yes, me, I cry. I get pissed. I lie here and think what’s next for me? My Crohn’s does NOT seem to get under control even though I’m on high doses of the “best medicines” available. I’ve gone through Cimzia, Humira, I’m allergic to Remicade but maybe I can try it again, and Entyvio is new, but what if those last two don’t work? What if Prednisone, meant for a temporary fix, still can’t do the trick? Is this my life? How bad will this get for me? I’m not even 30, people! I haven’t hit 30 and I’m somehow running through these drugs faster than the friggin’ roadrunner escaping a coyote. I’ve been on Humira since what last November? December? They increased the dosage end of January, and my Crohn’s is SPREADING?!

No, I know, I’m not bad off yet. It could be worse. I already know what worse is like. I see other people dealing with worse. And it’s not that I’m afraid of dying. I’m afraid of living a long, painful, useless life. What if I’m too sick to enjoy the world around me, permanently? What if I can’t be for my grandkids what my grandmothers were to me? Will I be too sick to give them their first surfing lesson, or take them shopping, or go to a trampoline park? Will I have to stop doing everything I love? Because, that, to me, is the real fear. Welcome to the dark side of Crohn’s.

Susan_Storm_(Earth-616)

Invisible Girl

Crohnically Ill

May is IBD awareness month, and to kick it off, I’m here to shed light on the Invisible Girl.

She fits right into any crowd, laughing at jokes, responding when spoken to, working (mostly) like anyone else, and appears to be just that- normal. Truth is, she isn’t. On the outside, you may see smiles, but on the inside, there’s pain. She looks like she walks and talks just fine, but inwardly, she’s fighting with each step to hold it together. Her social media may show a fun day with the family, but no one sees how she crashed soon after, stuck in bed with a bloated stomach and in pain for the next several hours.

That, my friends, is the Invisible Girl, living with an invisible illness. I’ve been told many times “you can’t tell by looking at you.” I mean, I’m glad I don’t LOOK the way I FEEL, because that would be a nightmare, but it can be a challenge when your illness is hidden. For instance, I’ve been in so much pain, that I can’t walk through a grocery store. Stuck in a wheelchair or scooter, I avoid the dirty looks people give me, assuming I’m some kid just messing around.

With friendships, often times I have to cancel or reschedule because of symptoms. This causes anxiety when it’s a new acquaintance. I explain my situation, but I worry they will assume I am just blowing them off. Granted, as I get older this happens less and less, but it’s occurred before. I was told that I wasn’t worth it, because I couldn’t make time for them. Well, I was sick as a dog and in need of surgery. I barely had time for anyone. I know canceling over and over and over grows tiresome for those who are healthy, but it can’t be helped.

At work, when symptoms flare, sometimes I can fall behind. My desk won’t be neat. Papers aren’t filed. I forget to respond to some emails. But people, for the most part, don’t see how hard it is to do what I am doing through the pain and fatigue. They see what I’m not doing. Fortunately, I work with some fantastic people, and they are understanding, but in that past I wasn’t so lucky. I was once told I was faking my illness in order to get out of work. I was pooping blood, bloated beyond recognition, and sat on the floor in tears because it was so bad. It took me bawling in front of customers (which I fought tooth and nail not to do) for the boss man to send me home.

There are times I’ve had to use the handicap restroom, because no others were available, and I just couldn’t wait. Sometimes I’m so desperate I beg people in front of me to let me cut. One time, I was in such a rush I started towards the same stall as an old lady. When I realized we were gunning for the same john, I stepped aside and apologized. Not only did I NOT get a “thank you,” but she gave me a dirty look and took the stall.

So the next time you see a young person in a wheelchair, or falling behind on work, or struggling with school, ask them what’s wrong, because they, too, could be fighting an invisible illness.

crohmniac

Crohn’s + Insomnia = Crohmnia

Crohnically Ill

It hit me, one crohmnia laden night, that there has to be a way to get the message out there to people what living with Crohn’s is like. It seems like every illness out there starts the message off the same way- drama, grief, and a sad, sad tale. Yeah, that’s the truth, but is that what gets people’s attention? The ALS ice-bucket challenge certainly used a hilarious tactic to get the word out, so why can’t we Crohnies do the same?

Introducing my post crohmnia stint YouTube film: https://www.youtube.com/watch?v=dnhfO52g5LA

The quality needs work; I’m well aware. I have new tricks to learn, more webisodes to hash out, and more embarrassing territory to explore, but I’m suddenly determined to do it. Will it get the word out? Maybe. I hope so. Either way, my kids and I are having a blast sketching out new scenes (we have an idea jar), and these are memories worth making with them, whatever may happen with The Crohmniac. So, for now, enjoy, and hopefully this will become a weekly thing, with better video quality and tighter jokes. The occasional serious vlog may creep in, especially on my down weeks. Regardless, I love telling stories, and I never realized how much I love a camera, especially all the editing tricks available. This wannabe geek has a lot to learn! So stay tuned, subscribe if you like, and I hope you enjoy!