Rare Disease Day, aka Fuck This Shit.

Rare Disease Day was created to bring light to the thousands of crazy, weird, impossible diseases that affect our kids and our big people. Its noted date is February 28th, or 29th in the event of a leap year.

My particular platform, on Rare Disease Day, is Peutz Jeghers Syndrome.

It doesn’t even sound real, right?  It sounds like something a soap opera character might contract in a Mystical Tropical Location, battle bravely for two seasons (enough time to collect an award or two and provide the show’s composer with lots of dramatic, swelling violin concerto opportunities), and then miraculously recover.

Yeah. It’s not made up. It’s some real, motherfucking, cocksucking bullshit.

PJS (as we in the rare disease biz call it) is a simple and also complicated asshole. Its afflicted are prone to the development of fissures in the colon and polyps throughout the gastrointestinal tract. The polyps contribute to: severe anemia and other vitamin/mineral deficiencies; ongoing bouts of excessive diarrhea with accompanying dehydration; tearing and ripping of intestinal tissue; food allergies; infection; intussusception (where one part of the intestinal tract folds itself into or around another part of the intestinal tract); rectal and internal bleeding.

All of that bullshit contributes to the highly increased occurrences of fast-advancing, often-untreatable cancer.

Guess why PJS is my platform. My daughter has PJS. Her daddy, my late partner, also had PJS and died from cancer at the age of 48. His dad, sister, and brother also had PJS and all of them died from cancer before they were 50.

My little love developed the telltale freckling on her lips at the age of two, right around the time her dad was being moved into hospice care. She’s recently turned five and has not developed any other symptoms (knock wood). She is exceptionally healthy and robust.

However.

Just today, she woke up from a nap with a 103 degree fever and crying that her tummy hurt. Then, she threw up three times.

To many parents, this is potentially a flu and a few days resting at home.

To me, this is potentially a trip to the ER with emergency gastrointestinal surgery and a six week recovery. This is not dramatics. This is our reality.

Some mock me for my insistence upon an organic, non-processed, whole food, limited sugar, and high fiber diet for my child. They think I’m snobby and sanctimonious. Go fuck yourself if you choose not to understand why I’m more than a little overzealous about what she eats: it’s my only line of defense against the gene in her DNA that wants to harm her. That gene, STK11, wants to take her away from me.

Not on my watch, bitch. I’ll fight you with everything I have, until my dying day.

For now, she’s watching Despicable Me with a cold washcloth on her forehead, a cup of cold apple juice, and a dose of children’s Advil. She’ll doze off soon. And I’ll be up, keeping watch through the night.

Cheers.

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Hi Honey.

Hi Honey,

I miss you.  Also, I wish you were here to remember to bring in the trash cans because that shit is hard and the HOA is on my ass about it.

So, as you may remember, our child is fucking brilliant.  Like even unbiased, she’s basically a genius.  She’s writing cursive.  CURSIVE.  She’s four.  FOUR.  I told you, brilliant.  Genius.  Our spawn gets a huge thumbs up.

Hey, so here’s the thing.  I’m really mad at you.  I know that’s not fair, because you had cancer and then you died, but I’m still mad.  I’m really, really mad.  This life, the one I’m living now, is NOT what we agreed to.  You were supposed to be healthy, to take care of our child and of us, and I was supposed to work and pay the bills and the other minutiae of adult life.  I didn’t agree to this.  Single parenthood.  Single income.  Single, single, single.

When I get mad, I hear you in my head (fucker): “relax, it’s cool, no big deal.”  Well, you didn’t do the Terrible Two’s, the Terrorist Three’s, the Ferocious Four’s.  I did.  So shut your mouth.  But I’ll be fair.  When I’ve hit my limit, when I’ve reached the point of BIG MAD, I hear you in my head.  You tell me to relax, to breathe, to chill.  Sometimes, I do.  Sometimes, I have to take a time out and yell at you in my head because YOU AREN’T HERE.  And I know you didn’t wish that.  I know you wanted it to be different.

I’m Trying.  I swear, I am.  I’m frustrated.  I’m tired.  I’m angry.  I’m…I’m everything.

But I’m trying.  I really, really am trying.  I love you.  I miss you.  I wish you were here.

Cheers.

The Epidemic Of Half-Orphans

My dear friend lost her husband recently.  They have three children.  Including those three kiddos, I now personally know seven children who have lost their fathers.  SEVEN.  And all of them under the age of thirteen.

That’s crazy, right?  It’s not just me who thinks that’s crazy?

My daughter was just a little over two years old when her dad died of cancer.  The very same day he died (03/31/2013), another friend’s husband died, also of cancer.  They were raising their granddaughter together (she still is), so he was absolutely a father to that child.  My baby and their baby were both made half-orphans that day.

(As a side note: that day just happened to be Easter Sunday.  Easter is on a different fucking day every year.  So we get to remember that awful day twice every year.  Just for shits.)

Whether it was cancer, an accident, or addiction that took these men out of their kids’ lives, I can’t help but feel this is an epidemic.  So many babies without their daddies.  I said “half-orphan” to my village the other day, then wondered “Is that a real thing?”  And yes, it’s totally a real thing.  Children with only one living parent are considered half-orphans.

You know what’s even crazier?  It’s so commonplace in my world, that now I don’t even think it’s all that crazy.

I need a drink.

Cheers.

Damaged wings.

I know that this a mommy blog and that I haven’t been writing about mommy stuff lately.  The thing is, my entire life is not about mommying.  Sure, like 92% of it is, which leaves me about 8% for Other Life Shit.  I feel like I have a decent handle on the mommying right now (famous last words, no doubt), so I’ve been focusing a little more on the Other Life Shit.

Plus, this is my blog and I can do whatever the fuck I want.  I am the boss of me.  Glennon Melton said so.

The other night, I was sipping a gin & tonic on my parents’ patio at dusk, when a little fluttering something caught the corner of my eye.  “Ooohh, it’s a butterfly!” I immediately set down my drink and stealthily (not really) crept toward it to investigate.

And then my heart splintered when I got close.

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This beautiful little guy was missing one of his wings and there was substantial damage to another.  Who could have done this?  A bird?  A neighborhood cat or dog?

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I got him to crawl onto my hand and I looked at him closely.  After a couple minutes, he lifted his top wings and tried to fly.  He floated down to the grass, rested a moment, then tried to fly again.  It didn’t matter who had done this to him, or when it had happened, or why.

This dude was not giving up.

I took some Big Time Inspiration from this monarch.  His wings were badly damaged.  He had no butterfly friends or family nearby, nobody to carry him back to his kaleidoscope (I totally just learned that’s what a group of butterflies is called).

And despite those obstacles, he was still trying to fly.  I often think of myself as a damaged person.  I think some of the damage is beyond repair.  I have an “as is” sticker on me.  But despite my own damaged wings, I’m still trying to fly, too.  And this little guy is still beautiful, isn’t he?  Those of us, who think we are just as damaged: we’re still beautiful, too.

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Cheers.

You are crystal.

Hi.  I still have depression and anxiety.

Just so we’re clear on that.

That, my friends, is a fine crystal martini glass (from Restoration Hardware…drool).

People with mental health issues, like myself, are sometimes crystal.  We are sometimes fragile.  We sometimes need to be handled with delicacy and care.

Please take note that I said “sometimes.”  Because, as I mentioned in this delightful gem of a post, depression and anxiety are not an “always” thing for me.  Sometimes, I’m crystal.  Sometimes, I’m Corelle.  Sometimes, I’m just a goddamn paper plate.

Anyway, the point is that many of us with this affliction feel that we have to apologize for our fragility.  It takes a lot to admit to being and feeling fragile.  It still scares me to say “I need help.  I don’t feel well.  I need extra care today.”  And when I do finally say it out loud, I immediately follow it with “I’m sorry.”

Why do we apologize for saying our truth?  Because depression lies.  Depression tells us to feel guilty for being fragile.  It tells us that it’s bad manners to be honest with our people about what’s going on inside our heads and to admit that we need a little help, a little extra care.

Fragility requires no apology.  Don’t we handle crystal with care?  You are crystal, friend.

Cheers.

What depression looks like.

Hi.  I have depression and anxiety.  I try to be very open about it, because I’m literally sick about the stigmas which surround mental illness.  If you have the flu, and you announce “I have the flu *sad face*,” folks around you commiserate and wish you good health.

If you announce “I have depression,” one of three things happen:

  1. You are ignored (or, alternatively, told to “cheer up,” which is actually the most awful thing to hear when you’re depressed and anxious);
  2. Someone thinks you need immediate placement on suicide watch;
  3. Someone who gets it (probably because they themselves suffer) says “I understand.  I’m sorry.”

Personally, I most often get this response: “But you don’t seem/look depressed!”

I actually understand that.  Movies, television, and other media show depressed people like this:

What depression is supposed to look like.

What depression is “supposed” to look like

If you are depressed, you should be frowning, constantly on the verge of tears or openly weeping, and never, ever, ever smile or laugh.  That’s bullshit, right?  I smile often, I laugh openly and deeply.  I generally have a positive outlook.  My depression is more of a quickly striking melancholy that lasts for hours, sometimes days.  My depression is a heavy weight on my shoulders and my chest, holding me down.  I’m not suicidal, nor have I ever been.  Most folks who suffer from depression don’t want to kill themselves.  The important thing to remember about depression is that it affects everyone differently.  My depression is not the same as yours.

Sometimes, when anxiety strikes me, I look like this:

Grumpy

Grumpy.  And don’t seem to realize that my sunglasses are on my head.

Lots of things make me anxious: clutter, lights that are too bright, too many tasks to accomplish in a short period of time, tight finances, tight spaces, too much activity around me, too much noise (actually, I could probably write an entire dissertation on the various noises and volumes that send me into a rage).  Sometimes, my anxiety causes me to just shut down.  When I’m in shut-down mode, it’s really difficult for me to leave my home, or be anywhere that isn’t home.  If I have to flake out on plans and friends, I feel awful.  Guilty.  Horrible.  Like a bad friend, a shitty human being.  And that almost always triggers a depressive episode.  It’s quite the adventure.

Fuck you, depression.

Fuck you, depression.

I know what helps me: sunshine, being with family and friends, medication, and therapy.  Talking about it has been the most beneficial for me, not just with my therapist, but with anyone who will listen.  I’m still learning about my triggers and what I can do to avoid them.  It’s going to be a lifelong process; I get impatient at times, because I want to be “fixed.”  I’m constantly trying to explain my behavior to those who don’t understand, and that gets really, really frustrating.  It makes me feel like a physics professor, explaining <whatever> to thirty blank faces.

Do you understand, or should I explain it again?

Do you understand, or do I have to explain it again?

Most days, this is how I look:

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With my smiling co-pilot

If you want to know about my depression, ask me.  I’m an open book.  If you need an ear or a shoulder, I’m here (just not too loudly, please).

Cheers.

I Interrogate My Parents…About My Daughter’s Poop

I work on Sundays and I’m super duper crazy lucky that my parents willingly watch my daughter for me.  She loves spending time at their house and I love watching an amazing relationship develop between granddaughter and grandparents.

That being said, Sunday Funday comes with a price.  When I come to retrieve my monster, I hit the folks with the following line of questions:

“Did she poop?  How many times?  What did it look like?  Was it big or small?  One piece or several?  Did it look hard?  Was it pebbly?  What color?  Did she have to work to get it out?”

I’m not a fecalpheliac*.  I swear.  I’m just a big believer that our bowel movements tell us what’s going on with our health.  You can tell if you’re dehydrated, need more fiber (or less fiber), consuming too much iron or other minerals, or possibly have an infection.

And look, this is a real thing.  It’s called the Bristol Stool Form Scale.  Click on the photo to get more info (it’s not graphic or gross).

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Also, my brother says that if you look at your poop, it means you’re a sensitive human being.  Be sensitive, friends.

* DO NOT, under any circumstances, Google “fecalpheliac.”  Don’t do it.  It’s awful.