Nostalgia: Finding the Joy Through the Pain.

December 30, 2015 by  
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FullSizeRenderShe writes!

The space that was once my therapeutic safe space has turned into a space I look at and occasionally dread. It is an awful feeling when a source of comfort turns into… darkness.

This is my life right now.

I fight for comfort. And yes, Momma still needs a beer, but not necessarily because of my children anymore. BWHAHAHA!! OK… sometimes.

I do have to put a little alcohol on it because of my chronic condition. My cute little tagline has become reality, and whether that’s something you find to be “a problem” or not… it works for me. Not every day. Ok ok… sometimes! Geez. Moderation is everything. But… other than Valium, the pills don’t always work. Also — Botox. I’ve had to undergo surgery 5 times this year for trigger point injections in my pelvic floor, and will be spending New Year’s Eve in the hospital — kids and all! Wheeeeeee!!

Pass the damn alcohol.

Because of my chronic condition without a cure, I’ve had to come to terms with a few things. First of all, find the joy. Find the fucking joy. Where’s the joy? What joy can I find in this shit?!! What CAN I do?!!

Ok: I “get to” watch a hell of a lot of tv in bed. Many people might even consider that a “luxury” — being “stuck” in bed because I can’t sit or stand for long periods of time without excruciating pain. I might have, once upon a time. I don’t as much anymore — but I don’t recall a time in my life when I’ve ever felt “bored” — even now.

I still find ways to be active within my community when I can. Writing, social media marketing, event planning, singing, volunteering, etc. Because, ya know what?! I’m not dead. I can do much of the above from my bed, from my laptop or smart phone, and still do when I can. Want to hire me? Email me — let’s chat. Momma’s got some medical bills to pay. HA!

When I’m not doing much of the above, I’m juggling family life, appreciating my kids’ laughter, music, art, stories, etc. They are my reason for living. Goodness, I’m SO lucky they are good to me. I’m not saying that to brag at ALL. They can be little shits like every kid. But can I freeze them at 7 and 11 please?!!! The sweet things they say and do for me make me burst into tears! Joy.

My friends are also an incredible source of joy. They check in with me and just… get it. They drag me out when I need to. And damn it — I DO need to get out — as much as I’d rather stay home and hide under the covers sometimes, going out for a beer with my friends and feeling like ME again means the world. The hubs doesn’t think I drink nearly enough.

My condition will not define me.

Finally… when I am in the cusp of those lonely isolating moments — I turn to my old pal television. We cut the cable cord earlier this year; I thought it would hurt, but it only brought me closer to my old friend. I’m now commercial free and LOVING it!! TV has always been there for me. As I grew up, I belly-laughed with my dad though Roseanne, Carol Burrnett and SNL sketches.

Today, I nostalgically dive through Saturday Night Live clips with my kids. They have fallen in love with Wayne’s World, Brian Fellow’s Safari Planet, and anything with Jimmy Fallon, Amy Poehler and Tina Fey. This goes beyond SNL to the wonderful world of Parks and Rec, though we haven’t dove into 30 Rock… we’ll get there.

My kids also love to watch The Goldbergs which is nostalgia HEAVEN for an 80s kid like me. If you were born in the 70s and haven’t watched this comedy GOLD… please do yourself a favor and just pick and episode or two and GO. I have yet to watch an episode and think “eh.” I love them all — and it’s hard to find a sitcom I can enjoy WITH my kids. A lot of them can be cheeseball — or just too many sex jokes. Nothing in between. The Goldbergs — somehow — have managed to find that middle ground. Thank you!

For me… having to say goodbye to Parks and Rec and Mad Men this year was a bit painful. They were my friends. Leslie Knope and Ron Swanson? Pals. That Peggy Strut was EVERYTHING. I always felt Joan Harris was my spirit animal — and the episode of The Christmas Waltz will forever make me wonder “what if” for a second between Don Draper and Joan… before I pull back and realize — it’s every platonic friendship I’m grateful for.

This is my life. I haven’t even mentioned how many times I’ve watched episodes of Ab Fab, or… goodness — Gilmore Girls as that IS my go-to comfort food. I am Lorelai Gilmore after-all. Except, instead of coffee… I need beer (or, rather — add beer to my coffee needs) instead of Luke’s, I go to Bob’s more than a gal should. The rest? Fairly spot-on.

I know. I’m insane.

Bare with me, I haven’t written therapeutically for awhile… but really, the places we go to find comfort shouldn’t be judged. Especially if we are suffering in one way or another. What else can we do? If we don’t laugh, we’ll cry. We long for joy and comfort. Nostalgia seems to fit the bill. Look at television these days… even current shows are going BACK to the old days to tap into our nostalgic haze. Many of the shows that I watch don’t take place in present day. When I’m not watching my “present-day” shows like Scandal or Transparent I go to Netflix or Hulu for my commercial free fix of something like… iZombie which is practically a reboot of Veronica Mars! I mean… come on — nostalgia at it’s finest.

The movies have been doing it for years. How many sequels and prequels can one movie have? Look at Star Wars?! JJ Abrams — I love you. You’ve not only reinvigorated a series FROM THE 70s, but you made me want to rewatch Alias! You can’t tell me Rey wasn’t in some way inspired by Sydney Bristow!! GA!!

And look at Lin-Manuel Miranda!! Hamilton!!! I’m obsessed. My daily soak in the tub wouldn’t be complete without reliving the last two decades of the 1700s through a hip-hopera. WHAT?!! Talk about nostalgia. Immigrants: they get the job done. Don’t know what I’m talking about? Download the soundtrack, my friends. Omfg.FullSizeRender (4)

My point, and I do have one — is that we all have to find our bliss in some way shape or form. For me — there are days I can’t leave my house because I’m in so much damn pain. It sucks. But I can’t just sit and cry and scream about it. Ok, some days I totally do!! But what the hell good does it do?! I used to feel better writing/venting about it… until the last couple of years — now I can almost count on an inbox full of judgy hater trolls after hitting publish wondering if I’m writing about them, among other choice words. Uh… No? I’m generally venting about… LIFE, people. This used to be my sacred space… doesn’t Tina Fey have a new rule about not apologizing for her jokes? I should look into that.

Because… talk about blowing a funny writing fuse.

The point is… I am writing now. I don’t know if I will continue to write in this space… but I’m writing today. It does feel good to share and spread awareness.

Know that if you are suffering from a mental or physical illness, you are not alone. I am suffering. I may never be cured. I am working on treatments. I am working on getting through each day. I am so grateful for those who talk me through it. Who hug me through it. Who don’t judge me for my genuinely happy posts on social media and just… get me.

I may never be “better.” But I’m trying. I’m still me. I’m powering through the best I can. Embracing the joy… and my beer! This chronic illness doesn’t have a cure, but I refuse to let it define me. And I appreciate those of you who still see the real ME behind the illness more than you could ever possibly know.

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New layer…

Our Little Acorn 2015-10-05 14:08:00

October 5, 2015 by  
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I am at a loss today.

I learned that yet another trach mom I know has to face an unbearable truth: her child died.

Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.

Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.

Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).

And these kids are fragile, and you should have expected that sooner or later, they'd die.

Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.

But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.

And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?

I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.

I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."

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