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Day One.

January 15, 2010

Didn’t resort to bubble wrap today.

But I have a fever.

And once again, today, Alex and I were bumped to an even lower priority in our little family/pod.

Sucks.

But on a positive note, Alex told me that SD cards have the information you save on them written in ink- really tiny letters and photos stored on the inside of the plastic shell in ink. Love it!  And my sugars were insanely awesome today.  Only 6% of readings were above target today.  Lots of lows and near lows, I feel like I ate my weight in Honeybell oranges, but didn’t have to bolus to cover meals and snacks at all. Weird. But I’ll take it!

And our meeting at school was rescheduled for next week… So transitioning Alex isn’t going so smoothly, as we can’t plan for anything without having a meeting to discuss the transition with his teachers…. Wish we could plan. I want to make this change over magical for him, as it’s a major milestone.

Happy Friday folks!

xo

B

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Thirty nine minutes until midnight….

January 14, 2010

Just Keep Swimming.....

It’s almost midnight.  1 hour and 32 minutes and our health insurance expires.

I’m not irresponsible.  Really. If anything I’m too responsible.

I have faith that my husband will be approved for an individual plan and that my son will be approved for the care he needs, but it is taking some time.

The next time I will be covered for medical care will be July of this year.

I’m terrified.

I feel the countdown in my veins the way I felt the anticipation of the feeling of falling –that gut in your throat verge of crapping your shorts feeling of falling- when I jumped almost three stories into the azure Caribbean bay almost 10 years ago. 10 years ago.  My body was healthy and strong. Complex in it’s nuances, but nowhere near as damaged as it is now.

1 hour 28 minutes.

I am without medical insurance because I did the right thing. I called customer service two years ago and again eighteen months ago and asked questions to make sure I understood the material, so nothing could possibly go wrong.  Unfortunately, customer service has, as it turns out, less of a grasp on the materials than I do.  The agency has concocted it’s own definition of one small word that is worlds apart from any other definition.  And it is that discrepancy that leaves me wondering what will happen to this broken body in the next six and a half months.

I paid $2000 per month for COBRA + copays for the three of us.  Because of this, I have to wait. F&$% being responsible. I could have just said screw it and lapsed and the boys may have qualified for medical care (better medical care than under our COBRA plan- at least for kiddo’s autism related OT and language therapy). But putting kiddo at risk of not having coverage, and risking spouse being unable to find a plan because of a pre-existing condition, was not an option.  And we couldn’t risk me going over to the medicare plan I had turned down due to group/employer coverage under spouse’s job because medicare was out of our financial means-more so than $2000 for COBRA and copays (or $750-$1000/month which is my share of that expense).  (Yes, you read that right-medicare more expensive out of pocket than COBRA/private coverage. I’ll share my comparison chart here once I update it.)  So for my forty five minutes on hold, I got an incorrect answer. And now the costs could be a burden until I die. Perhaps even longer.

I don’t even get my 45 minutes back to spend with my kid.

I am furious. I am sad. I feel, like my broken body has been pulling me away from my little boy since I got sick and now somebody who was completely incompetent in their work is pulling me away from that sweet child even more.  And I’m furious at the economy and the spouse playing Spore while I sweat and struggle to make sure everyone else is taken care of.  I want someone to share the energy and the drive for something better, for providing for our child, to share the load and the burden so I don’t have to be buried faster.

I want someone to say “Hey, I’m here. Slow down. We can do this together. We are in this together.  I won’t stop to rest while you carry on with your broken back and your unbalanced and heavy load. We’ll carry it together and then we can sit back and enjoy the world together.”

1 hour 14 minutes.

I warned my family last night, “If you are going to get sick do it tomorrow”.

I feel like there should be fireworks.

Or some sort of fanfare.

Or maybe we should have juggled knives or eaten fire or something before the 24 hour countdown to this particular midnight.

But regular activities, the danger of everyday things looms over me for the next 6.5 months.  On top of my already dysfunctional body. My personal time bomb.

My quest for answers about my newer inflammation – in my chestwall, my ribs, my joints, the inside of my eyes, the growth in my sinuses- is paused.  But the discomfort persists. It’s not white hot pain and pressure like my busted and deformed spine.  It is a deep ache when I move, like I feel asleep (in my pasty whiteness) on the beach for hours… My fingers, my knees, my ankles, my feet, my elbows, and my ribs feel like that sunburn pulling raw skin taut. But there is no aloe. And the pain meds don’t relieve it and I’m allergic to NSAIDS.  And it feels like pneumonia too, but it isn’t, it’s just the inflammation in the cartilage of the ribs.

This on top of osteoarthritis, and Type 1/Juvenile Diabetes, and a laundry list of other things. And I’m just so exhausted and I haven’t had a day off in almost 7 years.

So I’ll wait. And I’ll sleep. And I’ll hope. And I’ll sleep when kid is at school. And I am realizing how many things I do in a given day, even when mostly bedridden, that under these circumstance, could be risky.  And I can’t afford that.

I will have to make what art I can without flame, without grinding equipment.

For six and a half months.

58 minutes left.

I only hope that I make it through.  When I come out at the other end, I hope I will have moved on, but I can never forgive the time lost, that belonged to my sweet little boy.

54 minutes.  If I’m going to get sick, I had better do it soon.

My dark humor is coming in handy during this challenging (read: totally miserable and f’d up) time.

Things that occurred to me:

If I’m going to off myself, I had better succeed.  Oh well, 50 minutes left, surely any attempts to resuscitate me would fall after midnight, and no coverage and I know 911 and the hospital do not have a money back guarantee.

To paraphrase Dorothy Parker:

I might as well live.

The other thought I have:

That this is an opportunity to test some alternative (at home, dietary and physical therapy) ideas regarding my bone and joint pain.  Nothing risky, but perhaps I’ll track my personal routine changes here, as well as the results and the costs….

And to top it all off, school wants to put kiddo in 1st grade NOW. More on that tomorrow.

I think I am rapidly becoming exempt from managing all of this with any grace.

My smother calling to complain how I don’t bother to bring Alex to visit her or have coffee will seriously put me way over the edge. How far over the edge?  Like point of no return over the edge.

Please, nobody test this.

I have 44 minutes left. Perhaps I should shower now, so I won’t risk falling in the morning, when my coverage is nil.

I am a bit grateful that I accidentally ordered a refrigerator size box of bubble wrap from Amazon.com.  I’m thinking that a suit of bubble wrap and a helmet would be a good start for me.

Anyway, hugs all around.

Xo

B

41 minutes to midnight…..

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2009 and what I learned…

December 31, 2009

pomander

Originally uploaded by CleverIndie

Hell hath no fury like an entitled princess with a Facebook account and a chip on her shoulder.

Some people who should know better, don’t.

Never underestimate the lengths someone will go to in order to avoid having to apologize.

Some people think it’s ok to abuse (emotionally and/or physically) people who are different. Not all people think people with neurological differences are human beings with rights. I was surprised to find out how nasty people are even about kids with neurological differences.

Never underestimate the crazy talk of a narcissist with a remote and access to Dr. Phil and Judge Judy.

Never underestimate the negative impact of other people’s unreasonable expectations.

Some folks believe anything on TV or in print. Regardless of how truthful/accurate the information or the source may be.

When family f&$ks up, they feel entitled to forgiveness without apologizing because they are family. They demand the benefit of the doubt, but will never give it.

Rewriting family and personal history is an exercise in fictional storytelling. It’s better to be honest, so everyone can learn from the darker experiences (face it, we don’t rewrite the light and funny stuff).

People who preach endlessly about being positive, and demand only positive information from family and friends will wind up positively alone. Or committed. Have you read “The Secret”? It reads like a how-to on disproving personal sanity.

Bullies are everywhere, even disguised as seemingly sweet kids and kindly old ladies.

Many of the logistics of friendship have changed, making the whole confusing friendship thing accessible to those of us who have always wanted good friends but are clueless about the methodology of finding and keeping those friends. (Yay!)

If someone is willing to dish out the nastiness over my differences, they cannot be trusted to be kind to Alex (who has many of the same quirks and bonus features).

Nature has been known to kick nurture’s ass, on occasion.

The strongest, most important, relationships aren’t automatically those with family- they are the ones that are cultivated on a medium of mutual respect and a desire to understand and accept another individual, wholly.

That’s all I’ve got for now….

Just wanted to share some of the things I finally figured out this year… (and now I don’t feel totally guilty about the resolutions I didn’t keep! :-)

Happy 2010! I have a feeling it is going to be a good one!

Xo

Bek

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A kinder, gentler G-Bread……

December 27, 2009



gingerbread

Originally uploaded by CleverIndie

Alex:
“Mama? We are putting pills on the gingerbread guys?”

Me:
“Huh? What are you talking about?”

Alex:
“These red stool softener things”

*head*desk* (they were cinnamon candies NOT colace!)

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Ewwww ewww ewww

December 27, 2009



Ewwww ewww ewww

Originally uploaded by CleverIndie

Didn’t realize until I was nearing the end of 1/2 of the large chicken parm sub.
Look at the chicken.
I thought it was super perky rustic tomato sauce.
*gag*
Of course, I am more immuno-screwy than usual so this is the perfect time for this to happen… I’m in the midst of a course of prednisone.
Blech.
Nasty.
and I have the flu to begin with, so this foul fowl better cut me a break!
Roar!
xo
Bek

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Last Minute Gift Idea

December 16, 2009

There is still time to order from my Etsy.com shop for the holidays(within the US)!

I love giving my jewelry as gifts to almost everyone on my shopping list. Sometimes though, we all have gift emergencies. I have great treasures in my Etsy shop for women of all ages and a few pieces that are suitable for men, but some folks fall outside of that demographic or I just don’t know them well enough to hazard a guess on their tastes or personal style.

For example, I adore our UPS man, but all I really know about him is that he wears a brown uniform, goes above and beyond what I expect a parcel delivery person to do, he’s got a nice smile and fabulous eyes, and he brings treats aka stuff I ordered and forgot I ordered. Yay! Everything is a surprise!

(Holy cannoli, I just realized that I picture our UPS man as the UPS guy in Legally Blond. Funny. I don’t think I really know what our UPS guy actually looks like. Weird. I’m not bending and snapping though, not with these old joints! I’d get stuck and not even be able to sign for my packages. How embarrassing!)

Anyway, for those “I need a gift for someone and have had cash on hand since around the time they introduced debit card transactions at every checkout under the sun” predicaments may I suggest:

Amazon.com printable gift cards! That’s right! You don’t even need a legal name, full name, or email address. Just punch in your info and a message and any amount. Pick a graphic for your card (there are over 50 at last check…lots of them remind me of Target’s gift cards). Checkout and in a few minutes Amazon will email you a link which lets you print the foldable card (made me all nostalgic for Print Shop on the Apple IIc, though an inkjet printer and the modern graphics make these much prettier).

So while I suggest jewelry, jewelry, jewelry, and related adornments, I do know that sometimes you need a one-size-fits-all-tastes-and-budgets-last-minute-solution.

Without further delay, here’s the linkey-do so you can check out the options for yourself.
Amazon Printable Gift Cards

xo
Bek

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Wickedly Awesome!

December 9, 2009

Would you like a treasure box filled with CleverGirl jewelry?

Click on over to WickedlyChic.com where the CleverGirl giveaway is in full swing! (and there is a 10% off coupon for my Etsy shop as well!)

But it ends Thursday- so head on over and enter!

xo

Bek

p.s. don’t forget! If you haven’t signed up for the CleverGirl/CleverIndie mailing list there are surprises there as well! Click here to sign up

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You might have an Aspie kid…. (Holiday Edition)

November 30, 2009

(Kiddo's First Christmas, 2003)

Some of the top signs you might have an Aspie kid in the family (holiday edition):
1. You know that a label maker will be his prized Christmas gift

2. He really wants Santa to bring him a fax machine and a land line

3. An AC Adapter for one of his gadgets is an idea stocking stuffer

4. He is furious on Christmas morning because he thinks Dad ate the cookies.

5. He tries to spin every gift he opens

6. He tries to open his presents while covering his ears (because crumpling, ripping paper is too much stimulation for him) at the same time.

7. You do all of your shopping online because malls are sensory overload even at 9am on a weekday in the off-season

8. You get to skip the line to see Santa because your kid is too freaked out or just not interested.

9. Grandma Got Run-over By A Reindeer sends child into hysterics and calls must be made to verify health of all grandmothers

10. You frisk every piece of mail for musical greeting cards to disarm them before your child gets home from school. The risk of losing your last marble are very real as if he likes it he will open it repeatedly-only playing the first 5 notes and then he will close it and open it again and again and again until the battery runs out and then there will be a sizable meltdown and a trip to the market for more batteries and smaller tools and wasn’t the idea to skip stores completely during the holiday rush?

11. Your child’s amazon.com wishlist has a lengthy warning note about all of the above to warn well-meaning relatives so everyone can have a Merry Christmas!  You ask for additional quantities of Junior’s favorite toy, for emergencies.

12. There is a good chance you won’t have to pay exorbitant prices on the “must-have” toy of the season, but you will spend weeks searching for a special interest related item that your child doesn’t already have.  (my kid has a toilet shaped crumb vacuum from the UK.  He has moved on since then but we could probably open a plumbing novelty museum)

13. You wonder if there is a way to harness the energy expended by hand flapping and stimming. The holidays alone could power a small city.

14. You realize your child who won’t eat anything chewy or soft will eat pretty much anything in candy cane or cookie form. Google “broccoli cookies” and “no red dye all natural fruit flavored high fiber whole grain vitamin minerals protein candy canes” (found organic ones, by the way… beet root coloring!)

15. You plan your holiday baking less around gift-able treats and more around the occupational therapy benefits.

16. You are reminded, in all of the inevitable chaos, that you are luckier than most because you get to experience that Christmas morning thrill all year round as you rediscover the world with your awesome Aspie kid.

(here’s a link to yourlittleprofessor.com’s guide to gifts for kids with Asperger’s- it’s a “getting to know your Aspie” sort of an exercise for those who could use some insight into special interests and gift giving)

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Holidays!

November 27, 2009

Please see my Etsy shop announcements for details on holiday shipping!

I have also been listing like a madwoman today!

Here’s a sample of the new treasures!

xo

Bek

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Shipping times…

November 26, 2009

I wanted to share this with my readers who are busy shipping packages… I think it’s a neato snapshot from last year….
This is a report on USPS transit times from November and December 2008 (holiday rush) originating from
Cape Coral, FL