Tag Archives: MS

fiction #8? the bookstore. Jillie finds the first book that might help.

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“Ann Boroch?”  I repeated as I stared numbly at the title of the book in my hands, Healing Multiple Sclerosis.

“Do you think it’s a hard ‘k‘ sound?  Or a swoosh type finish? OR is it like chai tea?”  I asked Anya, annoyed at everyone who has ever had a hard last name to pronounce.

“What does it matter?”  Annie asked.

“It matters to me,” I said with an edge to my voice.  “Why can’t anything be simple with this beast?”

I turned the blue soft-hard-back over, looking for a hint of some sort of solution without having to read the 300+ pages.

“Here, you read it first, you’re a fast reader,”  I said shoving the copy into Annie’s hands.

“Do you want me too?  Why don’t we read it together?  We can hold a mini-book club meeting once we’re finished.  Or even check in as we read.  Come on girl.  You gotta read this stuff.  I’ll do it with you,” she said softly.

“Fine.  I just hope I don’t have to jump on the green juice wagon or whatever it is that’s popular with you kids these days – if I do it, you’re doing it too.” I said stiffly grabbing a second copy.

xo

chance encounter.

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exhausted.  after one night in Vegas.

I am getting old!

but have never had such a fab birthday!

last night in Vegas, I met a girl at our three card poker table.  I knew as soon as she sat down that her energy was good.  I liked her instantly.

she started talking to the dealer, who wanted to know where she and her hub were from etc.

chicago.

of course, that piqued my hub’s interest.

turned out she played water polo at my hub’s high school.  after it had been converted to co-ed.  this is not the first time we have run into former Fenwick peeps.  randomly!  i.e., when a gaggle of teen guys from Chicago were in FL wanting to play with my sistas…all attended Fenwick.  and jumped to attention once they heard my hub did.

anyhow, I digress.

this girl shared with our dealer that she wanted a break after dealing with a horrible diagnosis two+ years ago.

I couldn’t NOT ask her.

she had leukemia.  and kicked it out of her universe!  awesome.  we clinked our glasses.  she rocked.

I shared what I have.

and she said, oh, that’s way worse than leukemia.

whaaaat??  no way!!   I said.   not my version of MS.  no way, no how.

she said, trust me.

huh.

I still refute her statement.  though the hub and I discussed further tonight:  she knew what the treatment options were.  she had an end point to her treatment and kicked cancer in its balls.

got it.  just like I am kicking MS.  same story.  different circumstance.  no kids.  for the aforementioned reasons.  we got each other.  so, so cool!

my only regret, I did not get her number.  but we winked, mentally hugged, and high five’d as the hub and I left the table.  the best part…she didn’t believe I am 39.  ha!

xox

 

closing 2012.

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…and contemplating 2013.

because I do believe the world is going to keep thumping after 12/21/12.  ;-)

just re-read my inspiration list from 2012..and realized that I have  accomplished most of the items on my list…plus a few add ons.  i.e., myers-briggs training.  that was so cool!!

though, in a nutshell, it’s a reality that 2012 is closing just as crappy as 2011.

as far as still journeying with MS.  and losing a close family member.

I can’t imagine what my cousin’s wife must be going through.  I think about her a lot.  now we’re all three months post.  what happened to her (losing a hub), would flatten me.  and bankrupt me.  but maybe neither.  or maybe both.  who knows.

so I just keep praying with gratitude every day for what I do have.

sounds quite grade school, but one thing I have realized in ’11 and ’12, is that life goes on.  regardless.  life persists even after a life ends.  or changes significantly.  the loss of a job.  the loss of a house.  loss of health insurance.  failure.  loss of health.

life persists.

which is why I’m writing about Jillie and Anya.  to face some of the above challenges through them when it comes to my an MS journey and life challenges. must watch out though (when it comes to LOA).  good, happy endings will flourish.  :-)

outside that nutshell there was a lot of internal good this year as I look at my blog tags…

belief.  feeling.  live.  laugh.  love.  pray.  presence.  mindful-ness.  courage.  love.  gratitude.  acceptance.  perseverance.  heal.  write.  happiness.  love.  learn.  expand.  meditation.  strength.  giving back.  inspiration.

so what is up for 2013??   need to meditate on that over the next three weeks.

but at a glance>>>all of the good stuff above.  again.  and up the giving back.  +coaching.  +writing.  new one:  connection.

what are your take-aways from 2012?  would love to hear!

xo

ps.  this was kind of a bum-out post.  at least that’s how I’m feeling now.  I need want an artist’s date.  or perhaps give chap. 10 of the artist’s way a third read.  feeling a bit stilted with my writing since I stopped my 50 in 30 day blog-o-mania.  can someone give me a prompt please?  ;-)    one of the titles on my list is Owl vs. Al.  maybe I’ll work on that one later!  because that is one funny story…x

breakthroughs are a-coming. MS, watch out!!

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this is not my 50th post, though I guess this is the 50th post this month…maybe it can take the place of the post that I wrote, but never posted?  ;-)

got so excited reading this, I just have to share…such cool news on the MS front!!

any of you MS peeps out there,  please, please read this article!!

quick intro…

The results suggest that the critical step happens when fibrinogen, a blood-clotting protein, leaks into the central nervous system and activates immune cells called microglia…

keep reading here…

new discovery!!

there will be a CURE in my life-time!  I believe it!!!

ps.  I use upstream and downstream differently than this author…but if this discovery can attack MS upstream, I’ll take it!

xo

48/50: what the watcher knows.

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appreciate the input from my semi-self-flagellation last night! love right back at ya!!

real quick post tonight before I am off to play with a needle and read chap. 10 of the artist’s way. if you haven’t read the AW…read it!! esp. if you’re running into some blocks with a creative project.

speaking of needles (real quick, I promise)…a second syringe in the history of injecting myself succumbed last night. it sprayed all over the bathroom floor. instead of into my hip. brill. that was a $143 casualty.

so today I took on the role of the watcher while at my 7:20-5er..to compassionately watch myself whenever I had the urge to merge with some Hershey kisses and gf crackers.

found myself reaching for the crackers. when my blood sugar dropped. nothing new here. it’s the mid-morning, pre-lunch, all-afternoon snacking that really chaps me.

and then taking a look at all the other moments, I found myself reaching over and over again.

when I was bored.

wait a second.

huh.

maybe that’s it…

maybe boredom @ work is getting to me?!

eureka.

okay – that just hit me smack on the nose.

and it’s not that I’m sitting around doing nothing while at work.

the things I’m doing are boring.

because I have done them so many times. over and over again.

this is the longest I have been in the same job. it’s a good job, don’t get me wrong.

but I could do dream of doing so much more!

there hasn’t been a layoff for three years. so things have settled down somewhat after the last six.

there is a placiddull-ness that has descended upon the office.

hence my incessant eating…I eat to keep my brain functioning on some level…a base level, perhaps.

it’s the stuff I do before and after hours that really inspires me.

how can I infuse that inspiration into my working hours?

or maybe there is a larger question looming.

huh.

two more posts to go!! feeling exceptionally eager to post #50.

love to my hub, for putting up with me this month.

poor guy has been neglected. but he has been forewarned….2013 NaNoWriMo is on the list.

xoxo

47/50: men better at pointing out blind-spots?

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just read him #46.

his reply,

really, your cousin just died in October.  

we just celebrated endured two one year anniversaries…

your diagnosis.

my mom passing.

you’re stressed about work.

with all that, you’re fighting the urge to smoke.  

and you wonder why you can’t stop eating in the office?  really not that hard to figure out.

huh.

spot on, baby.

xox

45/50: bit too much off, eh??

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yes, yes. I concur.

what was I thinking?

getting behind early on didNOT help.

so I had to slam in a bunch of posts this weekend.

and depress myself…as I watch my page views begin to dwindle.

good job having zero attachment to outcome. (insert sarcasm here.)

but I vow (to myself) to finish up my 50 posts in 30 days.

after two posts tonight…only one per night for the remainder of the week.

wow, that’s it? how did that happen?! when did that happen!?

fun!

now I remember why I’m doing this…the process.

note to self: this process is a fantastic work and MS stress-reliever. keep doing it.

xox

43/50: Western Rock Medical Center.

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thanks everyone for following along!  you have no idea how your Likes and Follows make me smile and warm my heart!!  so thank you!  here is the last post of the weekend.  in the homestretch now.  seven posts to go, less one (already drafted).  whooeee…what fun this experiment has been!!

~~~

“You’ll like him, he’s got a proper job.”  Jillie replied.

“What is that supposed to mean?” I said, instantly annoyed that she would throw that back in my face.

“Kidding, honey, kidding.  You need to stop taking everything I say so seriously,” she chided me.

“Right, right.  I would if I didn’t think that there’s an ounce of truth in everything you say to me, you know that, so go easy on me, will ya?”  I shot her a half a smile.  “How old is he?  He better not be in his 50s like that last guy.”

“He’s hot and cool.  I just hope he takes my insurance,”

“I hope so too.  You didn’t answer my question.”

“I don’t know, he’s a guy and he’s cute, why are you so hung up on age?”

“Because if he’s too old, that means he’s had more years to strap on the baggage.”

“Or more years to work through the crap.”

“Fine, where do I turn in?” I snapped as we approach the medical building, unclear why I am so on edge today.

I pull into the Western Rock Medical Center parking lot, bottoming out as the front end of the Civic scrapes against the driveway.

“Sorry about that,” I say.

“No worries, it’s not like I haven’t done that.  This car likes to find pavement.”

I park the car about a half mile from the entrance in the only available parking spot, and shudder before we get out of the car.  I hate hospitals.  Ever since my Grandma was reconciled to spend the last six weeks of her life in an antiseptic hospital room.  She would cry and gasp in the middle of my visits, reaching out to only what she could see in her mind.  I asked the nurses if she did this frequently.  The gentle Filipono nurse would only shake her head, no.  ”Only for you, Ni,” she would say.  I would clasp Grandma’s cold, veiny hands in mine, and let her know she was getting closer, just keep climbing, God is waiting for you, I would whisper.  I would have done anything to expedite her transition.  She passed alone in her room one Friday morning.  Friday was her favorite day of the week.  I guess it’s true what they say, one enters and leaves this life alone.  I shook off my goosebumps, and returned to the present.

“You back, Annie,” asked Jillie, as she tipped her head to the right like she always did when she was trying to work things out.

“Uh huh, I just hate hospitals,” I said.

“I love ‘em, free food, constant care, and when you have your own room, all the TV you want to watch, and sponge baths by the hot male nurses,” she replied grabbing my arm and started to skip towards to the automatic door to to the waiting room, under the looming sign, Western Rock Medical Center, a Nice Place to Be.  I force myself to skip along with her, but I can’t shake this black cloud that rolled in after we left her place.

~~~

struggled a bit with this piece.  wanted it to be fun, but it just wasn’t coming out that way.  maybe I was in a bad-ish mood this morning while working on this, which rubbed off on Annie!  not much is going on either.  other than Annie knows something is afoot with Jillie.  not a fun piece to write for several reasons.

xo

39/50. playing with needles?

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11 blog posts to go in order to hit my 50 in 30 days.

a couple waiting patiently.  have already drafted 50/50.  so far it’s my favorite.  expect a few more snips of fiction.

but here’s a snippet of MS reality.  one that I would not classify as play time.

~

argh!!  how I hate my daily injections!

my back side is spotted and lumpy.  never know which injection is going to hurt.  1/10 I don’t even feel.  the other 9 burn and sting like a wasp stuck under my skin.  sometimes a big wasp.  sometimes a baby wasp.  they are all different.

but as I have mentioned previously, my hub keeps reminding me, better there than on your brain.

that is what I force myself to remember every time I release the AutoJect, which rapid fires 20 mg of Copaxone under my skin.

injecting in my stomach the last few nights.  much easier there.  stopped injecting in my arms.  as the Copaxone started eating away at my muscle tissue.  also scratched the legs for the same reason.  I still have a 1.5 inch divot on my right thigh.

rookie mistake:  pushing too hard into the flesh with the AutoJect.  for you newbies out there, don’t do that!

so now, I just keep track of the shots on my back side by the lumps that are still red.  don’t punch there.  or there.

Friday night I skipped.  freedom!

but then I worry.

I know my WBC count is up, if my swollen lymph nodes are any indication.

what if a few stray WBCs get through to my brain and start munching again?

huh.

freaky!

but a bit of a reality.  so I keep injecting.

so grateful that is an option for me.  despite the fact that it costs my insurance company $4300.

per month!

can’t wait until BG-12 gets FDA approval!  it will be just as costly, I suspect, but without the literal physical sting.

check out a NYTimes article on BG-12…

BG-12 shows promise!

big ps.  on another note, I get so tired bored reading that MS is a progressive degenerative disease.

it doesn’t feel progressive or degenerative to me!  most days.  ;-)

in fact, MS released me from myself, which feels more restorative than degenerative.

maybe that is the progressive part of its nature.

xo

38/50. car ride. Jillie and Anya.

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Jillie and I pile into her beat up turquoise Honda Civic, circa, 1979, and we are off to meet with her second neurologist to review the results of her latest MRI and extensive blood work.  She is nervous, I can tell.  Something went wrong this morning, before I arrived to pick her up at 11.  For one, she reeks of whiskey, looks exhausted, and she asked me to drive.

As I wrench the ancient car into second gear, grinding and squeaking gears, I contemplate, what life must be like for Jillie.

She grew up the second youngest, and from the outside, to what looked like a rock solid family.  But she was never rock-solid from what I have seen and what she has dared to share with me.  She has me on the say it like it is front, that’s for sure, but I can’t stop thinking that something went terribly wrong in her childhood.  She is zipped up so tight, and only talks in the present, so I feel like I’m missing out on a huge chunk of her life, even though we have been best friends since 2001.

“How was your night,” I asked cautiously, quickly looking to my right over at her.  She looks like hell, for one.  Her shoulder length bobbed dirty blonde hair is mussed up, and I can see that she just slapped on foundation a shade darker than necessary.  She has her Jackie-O glasses covering her blue, blue eyes.  I reach over and rub some of her mismatched color into her chin.

She waves my hand away, and pulls down the visor, which has a make-shift mirror clipped to it, with a bunch of receipts shoved behind it.

“I look like hell, don’t I?  I had a helluva night.  What I remember of it,” she replied as she licked her fingers and blended in her foundation.

“What do you mean, what you remember of it?” I asked, concerned.

She rolls down the passenger window an inch, pulls out a cigarette and snaps her Zippo on fire, breathing in her Marlboro Light deeply.  I roll down my window.

“Well, you know how it goes, I had a couple of vodka tonics, and the next thing I know, I’m waking up next to a mole-marked Nazi.”

“You’re kidding right,” I asked, a sinking feeling settling in my stomach.

“Of course, I am, silly!” she slaps me on the arm gently.

“So who is this new doc, what’s his scoop?” I asked ignoring everything my body is telling me.

~~

so be it.