Archive | July 2012

LAUGHING (ON THE INSIDE)

“LAUGHING ON THE INSIDE”

9 July, 2012

10:30 PM

I was thinking, having just absorbed the contents of my earlier appointment with my pain management MD, of the character, Mr. Mackie, from SouthPark:

“Don’t Do Drugs …. M’kay???”

YEAH. SURE.

I’ll get right on that. (or off that, as the case may be)

No drugs.

….YEAH! Right!

I’m laughing (inside*). My tummy hurts now, I’ve laughed so hard.

Aaaahhhhhh…. that’s funny.

No drugs.

I’m sorry. Ahem.

It’s medication, people. Medication.

Treatment.

Meds.

Stuff that make-a-ya-pain-no-so-bad. (Or not.)

Chemicals that make-a-ya-brain-no-so-bad.

Drugs.

Or, as my Mom and I have joked, for many long years:

Better Living Thru Chemicals.”

Or, as I like to say, when I really break it down:

“Good Times. ….Good Times.”

NOT.

***

I went to see Dr. Barad today. She’s my pain management specialist/Neurologist at Stanford, or “Steinford,” as I like to call it (that is a pun, guys. really. Get it? Dr. Steinberg? Stanford? Oy.)

I have not the energy to say much tonight, but I will keep this ” theme” in mind for a future Blog because there have been far too many chemicals involved in the treatment and management of this disease and some of the secondary diagnoses which have required drug intervention, as well.

Some of the stories are fall down funny, heartbreaking, blunt, stark …. and all …in the name of medicine.

I am about to undergo a new series of medications for a three month trial, a gnarly set of them, which we hope to use in both a “prophalactic” and an “abortive” manner (hey – I don’t make this shit up).

That means I will try taking a few new treatments (such a mild, polite word) every day with the hope that the “prophalactic” chemicals will:

a.) build up in my body

b,) do so without making me crazy (it’s a short trip, and we all know it)

c.) work

d.) most of the time

so that I can use the “abortive” chemicals

a.) less of the time

b.) but will have success with them when I DO use them because they are, well, stronger, and more agressive.

 

If, at the 3 month mark, I’m not starkers (and in this context, I mean, like, raving mad), then we’ll stop the meds and hope we’ve broken the “pain cycle.”

If not?

We move on to Plan B: (B is for “Butt” – as in, “if that drug cocktail didn’t work, this one sure will …. kick mine”)

Plan B involves more agressive chemicals across the board.

I hope we don’t have to go there. I am WAY too sensitive to chemicals.

No joke: you can spray some “Windex” on a rag two blocks away, and I’ll break out in Hives.

Wipe down the sink with a little “Lysol” and I will go anaphlactic on yo’ ass.

(Then, I WILL send you the bill for having to replace my rescue inhaler. It’s hella expensive! Like $95 for 40 metered inhalations…..)

I take Benadryl and have to be WHEELED out of the hospital.

You give me a sliver of a sliver of Xanax?

I’m ……gonna dance on your dinner table.

 

…Yeah….

 

So.

For these and so many other reasons, the most serious of which is the fact that I cannot continue to live in this extraordinary pain – OMG I really CANNOT DO IT – I pray to GOD, Buddah, Mohammed, the several cool statues outside, and the Holy Spirit that I DON’T have to go there.

(I’d also like to have a bebe, sometime in this lifetime, and that is gonna mean being drug free. Oh -and probably, my MoyaMoya will have to be stable, too. A girl can dream….)

Either way, I will be following up with Dr. Barad —  and Dr. Steinberg — at STEINFORD — in SIX MONTHS. Six. I’ve got six months to break-a-the-pain cycle –and to prepare for another arsenal of invasive tests, scans, and microsurgeries …to watch My MoyaMoya. (And raise the money ….again ….. to get my ever-shrinking yet still bootylicious arse back to the Bay. Area.)

 

Stick with me, Guys. Things are slowly getting better. I have hope.

Speaking of …. in summary, what have we learned, everybody?

Say it with me:

“No More Pain.”

“Break The Cycle.”

“MoyaMoya, stable? GOOD. Moyamoya progression? BAD.”

 

See? That wasn’t so hard.

You guys are all experts at this by now.

It’s all really ….Good Times? Right?

And ….all in the name of Medicine.

Thanks for your continued love, your support, your heartening words, and for just being part of this journey.

GO, TEAM!

(And Don’t Do DRUGS …. M’Kay?)

xox

B

PS: THANK YOU TO TODAY’S DONORS! David Laniel and Soolin Withrow. You Guys ROCK. Thank you thank you thank you!

www.indiegogo.com/rebeccasrecovery

 

PPS: *(“laughing on the inside” – Yes, Matt Bunting, that was a reference to you. Remember when???)

NO MOYAMOYA PICNIC FOR U!!!

NO MOYAMOYA PICNIC FOR U!!!

6.30.12

In bed. Day after ANGIO.

Owwww. Wwwwww. Ch.

See, my plan was to recoup from the Catheter Angiogram overnight (ever the workaholic, even in my current state, I believed I’d be up & at ’em today…)

My plan was to go be with my peers at the annual MOYAMOYA PICNIC, an event put on, once a year, by the Stanford Medical Center Moyamoya Clinic.

Yeah…

But my body had other plans.

Fracking steroids!

I was up all night with the jitters.

All the drugs I had pumped into me, and the ‘roids ruled the roost.

No sleep.

Oh.

And THE MUNCHIES.

Bad combo. Bad!

…I should have been out COLD by the time we got back to the hotel.

What an ordeal.

By that time of night? Yeah.

Sleep was on my mind. I moved sluggishly, hardly able to walk.

My body was heavy with torpor.

The cane I use on a daily basis was of no help.

… I needed a wheelchair.

Too bad hotels don’t come with them.

Jeeeze! You can get a spare toothbrush, a razor …. They have BLOWDRYERS ON SITE.

But Nooooo. No wheelchairs.

They say it’s a Man’s World.

I think it’s a Handicapable World.

***

So, natural, innate fatigue aside, I got some pretty heavy drugs during the Angio.

….My eyelids were fluttering open & closed at times, as I finally got some relief (thank you, Versed – the drug that’s SUPPOSED to keep you alert, but causes you to FORGET.)

…I remember it all.

But I felt the sedation and it helped me.

I used a lot of deep breathing techniques to work thru the acute pain: it shot thru my body like a million pieces of burning shrapnel.

There were times when I was fairly sure I was dying, right there on the table. I’m being serious.

There were also times when I could’ve succumbed to the sedatives. But, like a brat, I refused to give in to the sleepies.

…I’m made of stronger stock, see? We don’t give in that easy. We’re tough.

(As an aside, a rather important one, my team, and especially my Doctors also needed me alert enuf to hold my breath when they shot the dye into my brain vessels and arteries.

Any movement would compromise the end result: a series of “Gold Standard” images of my brain.

The surgeon uses these to decide which arteries he will use during the bypass.

Again: Ooowww.

To keep me focused, Dr. Marx kept saying this mantra, with very dramatic delivery:

“BIG BREATH IN. EXHALE OUT. TINY BREATH IN. aaaaaanddd:

DON’T MOVE. DON’T BREATHE.

DON’T MOVE. DOOOOOOONNNNN’T BREATHE.

AAAANNND ….breathe naturally.”

…..it was all I could do to not crack up. For realz.

It was ESPECIALLY hard, by the way, because the staff asked if they could play my not-yet released record, “My Red Telephone.”

Some of my lyrics are, um, rather ribald.

…All that “in” & “out” stuff just gave me the giggles.

(I’m sure the drug cocktail had nothing whatsoever to do with it.)

BTW?

I think I saw Dr. Marx blush under his face mask. On more than one occasion.

In all, the entire test took two long hours.

Then, it was done.

And I was wheeled out of the big,scary room with all the big high-tech equipment, high ceilings and sterile gear.

So back to a recovery room I went, gimpy as ever, where the next stage of the event went on (& on & on & on…).

But that’s a story for another time.

(SPOILER ALERT:

Another patient opened the door to the Loo -which I SWEAR WAS LOCKED – while I was trying to change after the whole palaver.

It was “SEE BEE, STARKERS, EVENT #18.”

As my friend Richard would have said:

“Awkward!!!!!”

***

So. We come yet again, round the many bends and turns that my story telling takes these days…

Back to the relative beginning.

I couldn’t sleep last night.

I believe this was in direct relation to the medication “Decatron,”

a steroid I was given, by IV, before the procedure, to combat my allergy to contrast dye.

The goal was to allay any anaphylaxis (breathing problems, hives, rash …mainly, to prevent my throat from swelling & closing off my airway)

I guess it worked.

That’s a good thing.

Duh.

But now, it’s now. And I crashed hard, this morning, after 9 or 10.

Finally…

I thought I’d have plenty of time to rest and get ready for the Picnic.

But my plan fell flat on its duff.

Much like me when I awoke and tried to stand up sans help.

Ooowwwww. Wwwwww. Ch.

…. I really hurt.

It’s painful to move my left leg.

I can’t lift it on my own.

Gggrreeat.

This should make trying to dress a breeze!!

So yeah.

Here I am, still in the jammies I so gingerly put on last night.

I feel great.

Greasy hair.

Tiny sweaters on my teeth.

(Not-so fabulous, people.)

Oh.

Did I mention the Doctor said no showering for two days? Eeewwww!

(can u say “sponge bath????”)

He also said no submersion (baths, pools…hot tubs…) for TWO WEEKS!

I live in So-Cal, people.

We loves our water.

Oy.

***

So, yeah …

I was planning on being at the Moyamoya Picnic today.

I set an alarm for 11:30 am.

It runs from 3-6.

That SHOULD HAVE left me with plenty of time to get ready.

Even if it is now after 1:45.

The truth is, it’s just not gonna happen this year. Not for me.

Which is sad on so many levels…

It’s a simple kind of day, really: there’s a BBQ, and talking.

We all gather for a picture together. The staff of the Clinic are always there.

It brings home the profound truth of this disease: such a small group, yet so large. Too large.

Our communities extend so, so far beyond those souls who stand by our sides in the photo.

You, who are reading this, you are my community, too. Thank you for that.

I think of the photo I have on my wall at home from the 2010 event -which you all helped me get to, by the way ….

The front row is comprised of our MM babes: kids, sitting on the grass, smiling, compliant.

They seem to have no idea of what they’ve endured. Or will, God Forbid, endure.

This disease is different for us all in how it has manifested itself within our bodies and minds. Some are luckier than others.

I know I fall on the luckier side.

I guess I do.

I don’t know.

Today, there will be no relay races, no tug of war and no potato sac races in the park here in Palo Alto.

As a whole?

We aren’t all super inclined to push and pull while getting rope burn, and call it fun.

We’ve survived enough trials and troubles. Most of us, anyway, don’t go looking for it.

(It seems to find us too easy, as it is…)

It’s just a get-together for all of us who can make it here to Palo Alto for the event. To reach out and know we are not alone in this mysterious world.

As for me?

I can feel their energy.

From here, where I sit, with ice on my leg and a conflicted heart.

I’m okay.

I’m really Bummed.

I am not in control…

My will will only get me so far.

Sigh…

So I’ll lie here awhile.

Enjoy the company I do have.

Rest.

Breathe.

… Be grateful. I’m alive.

I’m loved.

And honestly??

I’ll try, just try, not to cry.

XOX

B