Stamp this one DISABLED!

It still feels like a scream sometimes and something that should be whispered and then explained.

I heard it's an American thing to ask others what they do for a living.  "So what do you do?"  We always await some lofty reply, some great job to go with a great life.  The American dream, I suppose.  Those of us without a lofty reply feel like we have to talk our way out of it.  Maybe that's why those outside of the states find this both rude and intrusive.  

"So what do you do?"  I'm disabled due to multiple sclerosis but I'm a stay at home mom.  I sell on eBay on the side.

DISABLED screams and yet quiets the person across from you.  No one seems to know how to respond to the thirty-something disabled girl, especially one that has a lot of outwardly invisible symptoms.  I have a couple of canes, a couple of walkers and a wheelchair and the word "disabled" seems to make more sense when it's uttered with those assistive devices in the area.

I was declared disabled when I was just 30.  Fatigue and cognitive dysfunctions were the kickers.  I'm always tired but when I'm overly tired or too hot or had too busy of a day, my speech is affected and sometimes I can't make the words come out at all.

I will talk (or write) my way around the absent words.  Thank God for a good vocabulary. When one word is strangely absent, I can usually find one to take its place.  Sometimes it takes longer than others and sometimes it ends up in a frustrating game of charades.

Apparently an employer can't function with someone that naps randomly, loses focus and cusses at random when the substitution dictionary has been lost.  So, here I am.

How old will I have to be before saying the word "disabled" comes easy.  It's not hard to say, "My grandma is on disability."  People also get it.  If I say, "I'm on disability" it's like there's a stutter in the conversation.  It can feel like you have a stamp on your forehead and everyone around you whispering, wondering what's wrong.  "What on earth is wrong with her?  She looks too good to be sick."

I feel like I need a bumper sticker on my car that says "I have multiple sclerosis" so the handicapped plate makes some sense to people that look at me.  Maybe I would also need this sticker:

Grandma's Birth Story.

My great grandma bled for all 7 months of her pregnancy and gave birth to a premature 1.5 lb baby in 1928.

She was born at home and was delivered by her own grandma. She was presumed dead and put in a cigar box and set in a cold, back kitchen. My great grandma insisted she heard a baby cry and to appease her, the cigar box was brought back to her.

The baby was crying. She was itsy bitsy tiny, had no fingernails and you could see through her eyelids.  She could fit in her mother's hand.

She never went to a hospital. It was later found that babies born at such a small weight that were hospitalized went blind due to the oxygen concentrations in the isolettes.

The baby was fed with an eye dropper and lady's hankies were used as diapers. She survived and thrived. She is 84 today.

Ebay Dos and Don't.

I have items in my store that have been there for some time. It's okay with me.  I understand there's a niche market and hope to find just the right buyer as time passes.  I have a store so I list most of my stuff there and use the best offer option on them so people can make fair offers and I can happily collect my money and send them off their treasure.  Every now and again I make my own little glitches and customers try to make bumps in my road.  Here's a little list of dos and don't.

Do:  Buy great, unique, special, worth big bucks items for cheap and resell them.
Don't:  Buy crappy, broken stuff and crab when no one wants the stocking with a name already on it.

Do:  Act professionally to all customers, even the ones you feel deserve a kick in the face.
Don't:  Type what you are thinking and hit send.

Do:  Scrounge for free packing supplies even if that means dumpster diving for boxes (best to ask the store owner before you do this).
Don't:  Wrap a matte finish widget in newspaper and then be surprised when the newsprint wears off and damages the item.  We are trying to sell items not recreate a Silly Putty adventure.

Do:  Research the cost of shipping items before buying something whose shipping cost outweighs the value of the item.
Don't:  Offer free shipping on 12 lb. items shipping to China.

Do:  Offer a reasonable shipping cost for your items.
Don't:  Charge $15 to ship a postcard - jerk.

Do:  Look in boxes and under tables at sales.
Don't:  Jump with excitement when you find a Gucci scarf for a quarter (yes, true story - sold for $97.50).

Do:  Open your items up to a worldwide market.
Don't:  Be afraid of international shipping.

Do:  Stay in your pajamas as long as humanly possible while listing.
Don't:  Complain that you had to put on real clothes to go to the post office because people that have a "real" job get pissy about that.

Do:  Have fun with it!
Don't:  Let a negative feedback ruin your day, month, year.

Do:  Use best offer.
Don't:  Wonder why some items haven't sold and then realize that you actually never added best offer on that item sitting in your store for 5 months (fixed a couple of those tonight - oops!)

Do:  Share your eBay items:  My eBay store - sell-n-out/collectibles-n-store
Don't:  Forget to share them with me!

Christian artists, listen up!

First off let me say that I've given the Christian radio stations a chance time and time again.  I think "maybe this time I will hear something inspiring, something I will really like".  I struggled through one song and try to make it through another and I cave.  

Don't get me wrong, I believe in most of the lyrics but some of the songs are so boooooring and lyrically unimaginative.  I might be impressed if the songs were written by 2nd graders but they aren't.

I'll listen to 80's era Petra (though surely some of those lyrics are equally uninspired and cheesy).  I like Johnny Q. Public.  I like some Steven Curtis Chapman.  I haven't found much Christian music that really makes me think.

I dub myself a lyriphile (lover of lyrics).  If you don't say something I haven't heard a billion times, I'm not likely to like your music (dance music is excluded just because it's dance music, that's all).

My favorite artists are Toad The Wet Sprocket (Walk On The Ocean), Crowded House (Fall At Your Feet, Better Be Home Soon), The Cure (Pictures of You).  

If you know any Christian artists that write music like that, I'd love to know about it.

From Pictures of You:

Remembering you, how you used to beSlow drowned you were angels, so much more than everythingHold for the last time then slip away quietlyOpen my eyes but I never see anything

Petty MS Annoyances.

Let's put the chronic, incurable, debilitation disease aside for a moment and focus on little, stupid, annoying MS things.

It feels like I have sunburned feet tonight.  I keep looking at them thinking that they must be burned and see the pale, white skin, barely touched with sun.  Over and over in my head it rolls and I keep reminding myself that my feet only saw 10 minutes, tops, of sunlight today and about the same yesterday nevermind the fact that they aren't actually red.

Sometimes my pinky fingers feel numb, like if I didn't know I had pinky fingers I wouldn't know they exist.

I have the odd, invisible line on my body from the top of my head to the tips of my not-sunburned toes that divides my body in half.  Left side, normalish.  Right side, not so much.

Silverware is not always safe around me as well as my fellow diners.  I have flipped many a fork or spoon right out of my hand and across the table.  This has happened with writing utensils as well.

If I stand so I feel perfectly balanced I have to put so much weight on my right side that I nearly tip over.

It's hard to walk with ice packs strapped to your feet and it's hard not to look like a complete dork with the freebie cooling vest filled with ice packs strapped to your body.

My vision and balance are affected by the heat.

I get random bouts of nausea and vomiting.  I'm not sure if that's the MS, though, or a mild version of Cyclic Vomiting Syndrome (yes, I'm into self-diagnosis now, too).

It's hard to find shoes that feel normal with abnormal feeling feet.  Avia and Birkenstock are my favorites!

People act jealous that they don't get to take a nap during the day.  "Boy, that must be nice."  I read a shirt that said, "A nap is only nice when it's a luxury not a necessity."  Boy it must be nice to be able to stay awake for a whole peckin' day.

I would love to be able to work on eBay sales like a full-time job, heck a part-time job would do.  My goal is to work on it an hour a day but I don't often make that goal, either.  I'm just too tired.

Well there's surely more.  Anyone else have some to share?

Intense Anguish and Lavish Joy.

A year ago my cousin lost his beautiful wife, Megan, to preeclampsia and HELLP syndrome.  It seems so foreign and unreal that in this day in age, with these medical advancements, that these things can even happen.  I have thought so many times over the last year that this simply cannot be real.  How can it be real? These things just don't happen.  This motherly life was supposed to bring the greatest joy to their little family. This tragic death brought the greatest pain that a parent and a spouse could ever know.

In the midst of this bone-crushing pain was a perfect little girl, born 5 weeks prematurely but so proportional, so strong, so beautiful, laying in an isolette next to a so-broken daddy who never looked to have so much love in his whole life but utterly torn all at the same time.

This past year has grown a child from needing the support of machines into a walking, jabbering, giggling, smiling little girl.  It has also seen a man at the absolutely lowest breaking point to a man with the strength that would  seem otherwise unattainable.

I've thought so much about Megan's mom and how the last time she spent with her dear daughter was last Mother's Day and how that must just tear her heart and prayed that she can find joy in today so tragedy won't forever overshadow her joy of being a mom.  I've thought about her dad, her sisters, her brother, her nieces, nephews and friends.  I've mostly thought about my cousin, Travis, and how he has managed to get through this year with such grace and composure, putting everything he has into being the best dad he can be.

I pray that you all have the strength and peace to get through this day, little Annaleigh's birthday, Meg and Trav's anniversary and Megan's birthday that are all so close together. May you find a way to rejoice in the time you had and share more fun and laughter than tears.  Bless you all!

Coloring Crayons in Church.

I was diagnosed with multiple sclerosis in November of 2004.  At the time, I thought my focus problems were more from having to deal with a toddler and just being preoccupied with "mom stuff".  A couple of years passed and it seemed I could sit through an entire church service and leave not remembering anything that I had heard.  MS brain, yup. Mommy brain, yup.  Frustrating, absolutely.

At the time I had resigned myself to the fact that this was how it was going to be.  I didn't see a way to fix my focus problems and jolt my brain into remembering what was said. One day my daughter had a coloring book in church and I grabbed a crayon and started to color along with her.  I didn't think anything of it at the time but when I left I realized that I remembered some of what I had heard.

Sundays came and went and I continued to color alongside my daughter.  My brain settled in to a comfy place where there was a sort of brain fractal where I could shut off all the awkward buzzing of people moving in and out of church to get coffee, use the bathroom, rescue the nursery staff from a screaming child, a random cough or other such distractions.

I bought myself some very detailed adult coloring books on Amazon (forewarning: searching "adult coloring books" brings up some searches of an awkward, maybe unsavory nature but, unless you are unfamiliar with human anatomy or blush at the sight of black-line drawings of girly bit and man bits, you should be okay if you come across the select few among the multiple books).

You can get books on geometric designs, paisleys, floral arrangements originally done by famous artists, Chinese dragons, artwork from famous theatrical signs, Renaissance clothing, Tudor houses, architecture, landscapes, famous historical figures, animals and on and on.  I also bought a box of 120 crayons and a crayon sharpener.  I use the sharpener all the time since the books I chose are very detailed.

I color every week.  I remember the sermons.  Who would have thought that focus would be found at the bottom of a crayon box?

Things I learned from my mom (partial list of infinite teachings).

Faith in God.

Death comes with a feeling of warmth, security, peace and an eternal promise (Praise to God for sending our mom back to us!)

Unconditional love.

Strength through adversity.

Knowing that my illness will only make my child stronger, more compassionate, more understanding and more able because I went through the same things as a child and that is who I have become.

How to laugh until you find it hard to breathe.

A mom can be much more than the mother figure, she can also be a wonderful friend.

Commiseration is just a phone call away.

It is possible to talk for hours and hours with no breaks, no awkward silence, no direction or path and enjoy every minute of it.

You can have fun for two with just $5.  That is less of a mathematical fact and more of an inside joke.

Mom, I love you.

"So You Think You Can Dance"

One of my favorite shows is "So You Think You Can Dance".  These are dancers that really can dance.  I have no interest in watching B-list celebrities try to dance on "Dancing With The Stars" even though I do find it amusing that some of their "professional" dancers are ex-SYTYCD alums.

I have had so many dances I have loved over these many years and like my last post, there are songs I hear on the radio now that I always associate with a dance.  Beware - I share.

David Bowie's "Fame"

Alex Wong (specialty - ballet) and Twitch (specialty - Hip Hop) "Outta Your Mind"

Melanie and Neil to "Total Eclipse of the Heart" keep your eyes open at 1:17

Lauren Frodeerman and Kent Boyd "Collide" and an unscripted kiss at the end

"Ramalama (Bang Bang)" - zombie dance

Lauren Froderman and Tadd Gadduang "Another One Bites The Dust"

Janelle and Dareian in "My Girl"

There's lots more but I don't have time to look them all up tonight.  I'll keep adding.

When I hear ____________, I think of _____________.

I enjoy movies and I enjoy music and some scenes get so deeply ingrained that separating the song from the scene is impossible to me.  It's like they have been permanently spliced in my brain.

Tom Petty's "American Girl" and this scene from "Silence of the Lambs"

Kansas' "Dust In the Wind" and this scene from "Old School"

Diana Ross and Lionel Richie singing "Endless Love" and this scene from "Happy Gilmore"

Spandau Ballet's "True" and this scene from "The Wedding Singer"


Now there are a lot more that show up in music/dancing movies but I didn't count those and, besides, instead of posting 47 links from "Dirty Dancing", I think it would be faster to just tell you to watch the movie.

I'm sure there are more that I will think of later but this is a good start of the songs that ALWAYS pop movie scenes into my head.

Odd and scary expectations.

I have a couple of things that I always expect.  These aren't normal expectation.  These are those um, really? expectations.

1.  Every single time I start to open the door in a public restroom, I expect that I will find a dead body.  Even more odd, I expressed this to my mom and she said she has the same thing.  I always wonder if it's a way of preparing me for something I will inevitably face or if I'm just messed up in the head.  Of course, like so many things, these are not mutually exclusive.

2.  Whenever I see someone drinking from a drinking fountain or drink from a fountain myself, I have images of some bully shoving faces into the spout, causing tooth loss, blood letting and pain.  Yes, again, I may be a little messed up.