Sunshine is a Must Have for....

When your daughter comes home excited about making a solar hot dog cooker you make DARN sure you're just as excited!  Then you read my blog and realize you're not alone. If you're like me, you don't just smack together some aluminum foil and a box. You build that cooker to the best of your ability because you don't want that sad little face coming home saying hers didn't work. So gather your supplies, take some calming deep breaths and read on!! 

Making a solar cooker you need to have some basic materials such as heavy duty aluminum foil, Saran Wrap, rulers, yard sticks, square, card board box, poster board, scissors and such.  Of course sunshine is mandatory!

What you don't realize you're going to need is: Caffeine, that simple project is going to tip over the edge and go right on into 'overboard' territory. Pizza & brownies because you won't have time to cook dinner and you'll need chocolate!  Trust me, it's as necessary as the aluminum foil. Several trips to the store because if you're like us the products you bought are flawed...solar blankets that are too crinkled, umbrellas that don't open, spray adhesive with no nozzle, wider aluminum foil because 'normal' aluminum foil is just too narrow.  

You know all those people (I'm included) who say...15 years have passed and I have yet to need to use algebra. Weeelll, not exactly. You need a parabola formula. If you're like me and don't remember anything from math class except basics skills and that you were glad when it was over, you're going to wish you paid more attention.  Sure you can eyeball it and curve the parabola where you think it will reflect onto your focal point, but that's not sufficient enough in our house. Everything is a learning experience. I've learned things from this third grade project. I learned that I'm not smarter than a fifth grader, probably not a third grader if they're supposed to know parabola formulas. I also learned that every time I buy a spray can of anything I will open the lid first and make sure it has a nozzle. Similarly, before buying an umbrella I will make sure it stays open. Carrying around a closed umbrella on a rainy day is about as helpful as brushing your teeth with an Oreo. 

I also learned that I'm not cut out for roughing it. I like electricity and I like my stove. If I want a hot dog and the grill is without propane I can turn that knob on one of my favorite inventions and I don't need a math equation to do it. So, whoever invented the stove, microwave, air conditioners, and indoor plumbing - thank you!  

Sure it's fun for the first hour or so, it's nice seeing our kids learn, and it's family time spent away from computers, TVs and other electronics. You know what?  I like those too!  I also liked seeing their beautiful brilliant minds working, even though I thought my own, dinky, dusty brain was going to explode. 

We're overachievers here, and we've made a few attempts to perfect our Princess's solar cookers. We made a dome solar cooker which was too large to transport - though it did work. We have a scaled down dome more easily transported and a parabola box cooker still in the works.  There is also a cylindrical solar cooker which I'm not sure will heat enough. More importantly, we have quality family time spent learning and one happy little girl! 
...hopefully.... 

Y=X^2/(4F)

Mission Nearly Impossible

June is Myasthenia Gravis Awareness month and Mission Nearly Impossible was underway these past few days.  What mission is that, you ask?  The mission I begrudgingly accepted:  Mission - Find Just Me...Crystal D a Swim Suit. 

 

Simple, right?  Wrong.

 

Yes, I have all of those insecurities every other woman over a size 4 has.  I have body issues.  I'm lumpy in places, rolly in others, and uncomfortable in every area between my elbows to my shoulders, from my neck to my knees.  Who thought up these medieval torture contraptions anyway?  Whoever you are I loathe you.  No one wants to see those lumps, rolls and jiggles.  No.  One.

 

I didn't want to frighten small children, including my own.  Nor did I want to send beach goers scattering about, clawing at their eyes trying to rid the images of me out of their minds, so this mission was nearly impossible.  Sure, I could have gone the easy route, closed my eyes and randomly pointed at a garment and carried it to the check-out line.  But alas, I'm not a size small, extra small, or wow she turned sideways and disappeared!   So I had to search.  High and low.  Through every rack in PoDunkVille.  Then I moved outward in search party, which included my husband, daughter and I perusing the mall.  Our son, he closed his eyes through most of it.  I jest, he glued his eyes to the phone in earnest in an effort to close out the images of women searching for their own suits.  Some of those women were red faced and nearly bald from pulling her hair out.  I think her name rhymed with my own.  Maybe it was a homophone?  Oh heck, I admit it that was me.  Yes, I was frustrated. 

 

A few years back I would have just been looking for a flattering suit.  This year, however, there were added stipulations to a suit.  Stipulations for Myasthenia Gravis, that is.  Most women who feel the least bit jiggly, those who have mom-bods, or have a little extra cushion in places want those miracle suits which take you from a size 12 down to size OMG-I'm-going-to-pass-out-because-I-can't-breathe-but-I-look-so-much-thinner-now.  Yes, I remember those suits glaring at me, calling out to me shouting I'll make you look so much nicer Just Me...Crystal D!  Remember them hanging right there on the racks, that is.  We slowly and methodically grabbed every suit in my size, which ranged from where's the rest of the material? To no way would I be caught dead wearing that  All the way to I think my grandma had a suit just like that!

 

Elimination took much less time, of course.  The potential Just Me Crystal D suits journeyed with me into the fun house.  You know the place in every women's dressing room across the U.S., I've spoken of them before.  They have fun house mirrors in them where the image staring back at you has a look of horror on her face while the rest of the image reflected is stretched out into an unflattering view.  I walked in with my arms loaded, as much as MG arms can be loaded of course.  I walked out much lighter. 

 

With Myasthenia Gravis we must have the ability to actually pull the suit on, this is not something I ever considered a few years back - I thought the miracle elastic was wonderful.  Now, on the other hand, it is my nemesis.  I need the ability to not only put the suit on, but I need muscle strength to enjoy the day in that swim suit.  I can't have anything constricting my chest which makes breathing harder and can dangerously weaken our diaphragm.  Lastly, at the end of the day I need to be able to remove it.  Simple for most, not so much for me and my fellow MG sufferers.  This affliction changes our whole lives.  Myasthenia Gravis steals away simple things, deprives us of life's pleasures, leaches away our energy.  It robs us of time. 

 

"It shouldn't be so hard to buy a swimsuit!"  Those words, spoken by my best friend, are the truth of the matter.  It shouldn't be so hard.  Unfortunately it is.  This isn't the life I would have chosen for myself, this life with MG I mean.  I would love to go back several years ago, where the worst thing I had to worry about in regards to a suit was 'is it flattering?'.  Now I need a whole disability swimsuit, I joked while she tried helping from afar.  This swimsuit issue is just a reminder of how different things are for people like me, where a seemingly simple task takes three days to accomplish.  Yes, it literally took three days to find a swimsuit and at the end of each of those days I was exhausted.  I did not walk all over the mall, up and down aisle after aisle because I simply cannot. 

 

Do I wish things were different?  Of course I do, but that is not to be and I have accepted this new life.  These new limitations can be quite disheartening but I refuse to let MG take over and dominate my whole life.  I suck it up and deal with what I must:  treatments, dangerous medicines (which children or anyone who plans to reproduce cannot touch), limitations and changes.  Because of MG I have learned to: take time to see sunsets in parking lots when I can't get my legs to complete the journey to the car, appreciate the small things in life, breathe in the scent of rain in the air, hear the laughter of my children as they play, delight in the hugs and gentle squeezes received especially when things are shaky.  I have also learned to be thankful that I have today.  Today with those wonderful kids and my husband my life is imperfectly perfect.

 

I found a few swimsuit tops to wear.  Maybe I won't be comfortable walking out to the beach in my ruffled suit, or the one which flutters about in the ocean's breeze.  Maybe I will get a curious glance or two.  But I will be proud.  I will be grateful.  Because I have one more day with them.  Those who make the frustrations, the fears, the sleepless nights all worth it.  I live for them.  I push through with a prayer on my lips and three cheerleaders in my corner encouraging me on, and extended prayer warriors remembering me in their nightly prayers.  That mission, it was only nearly impossible.  I will continue fighting through each mission!

 

#IHaveHeardOfMG - have you?

#IAmTheFaceOfMG - I am Just Me...Crystal D.  I am a mother.  I am a wife.  I am a friend.  I am the face of Myasthenia Gravis.

I Think He Likes Her

I've been doing really well, lately.  This year's open house was much different than last years'!  I know that always in the periphery MG lurks, but it can just look on as I live life.  Walking, talking, laughing and stressing. 

 

 

Tonight I walked up and down and all over the kids' school with them, going from class to class following Hot Rod's schedule.  I am proud.  Proud of how far I've come, but as always proud of them.  I cannot believe my little buddy is now in middle school, soon puberty will hit and I'll long for the less complicated days of present without raging hormones, tempers and girls.

 

Currently, he's in a 'girls are scary' phase.  Or at least, they're too scary to talk about with his mom.  As he marched up and down the halls saying hi to this kid and that kid, mixed in those passing greetings were shy waves, smiles and "Hi's" to girls.  Last year we had a conversation much like this:

 

 

Me:  So, are you making friends?

 

Hot Rod:  Yeah.  I'm friends with most of the boys.

 

Me:  What about the girls?

 

Hot Rod:  I don't talk to them.

 

Me:  Why not?

 

Hot Rod:  Because they might think I want to be their boyfriend.  And...I'm only ten, I'm not ready for that!

 

 

Good thinking, my son.  Don't talk to those yucky girls!  But I can't say that to him, I need him to understand this a world of equal opportunity, women's rights and all that jazz.  So I'm left with only one thing to do, if I want to be politically correct (which I'm not so sure I do!).  I push aside my hesitation and say, "You can't not talk to the girls."  (Especially considering there are times he sat sandwiched between them in class.)  "How would you like it if no one talked to you?"  You know that mind bendy parent guilt trip gets through to them...'put yourself in their shoes' we say.  All the while I'm secretly happy he's not conversing with the opposite gender.  Eyes on the prize my man - graduate, go to college, get a good job, then get your first girlfriend!   I smile, triumphantly and then the thought of him becoming a forty year old virgin (what?  Pharmacy school takes years to get through!) plagues my mind.  Yeah, I do dream of actually meeting my grandkids while I'm coherent enough to hold them (which I can totally do now - thank you for showing me that Wonderful Cousin-In-Law....is that a real thing?  If not, I invented it and would like to patent the idea!...You know who you are!).  So waiting until he's forty to get his first girlfriend isn't so appealing now.  *sigh*

 

 

As he walks down the hall, growing more and more confident in his map reading skills, he's cornered by a girl.  A GIRL, I say!  A girl with arms outstretched to hug him.  He relents and she hugs him, and hugs him, and *ahem*...Will she ever let go?  Isn't there a no PDA policy here?  Come on guys, where's the SWAT team to descend upon PDA displaying adolescents and pry them away from each other, like when I was in school (in the stone ages, I guess)?  I begin to worry.  I look at his face and it's a flushed shade of embarrassment, but notice he's hugging her too!  Oh my.  You read that right!  My baby hugged her too.  Arms wrapped around her while hers encircle his neck and dig into him.  I was beginning to wonder when she was going to declare 'I will love him and squeeze him and call him George'.  College, Hot Rod.  After college.  Right? That's not too much to ask....is it?  Anyone?

 

 

I think he likes her.  He fears she likes him.  I fear either of them liking the other and I think I need a nice warm blanket and the corner of a dark room in which I can rock myself gently while I grieve the loss of his baby years.  He's in middle school...and I...I think he likes a girl.

Hopeful Ramblings

I'm alive...I'm alive!  Of course, you simply must read that in your best Mary Shelley's Frankenstein voice to get the full effect!  Don't forget to raise your shaking fist in victory while muttering the words.

 

 

Sorry, it's been a while.  I've been busy with the kiddos, school, dance, summertime fun - LIFE!  Today I have a little "I'm-bored-must-write" time, and while I should be working on a larger writing piece I found myself here instead.  I know I've touched on this before but I felt compelled to do so again.

 

 

Today I read another blog about being chronically ill and how one deals with it/what one's life is like because of one's illness.  One thing which struck me, regarding her article, is that she said we rarely have hope.  I include myself in this 'Chronic Illness' category, because for anyone who isn't already aware I have a chronic, at times debilitating, illness called Myasthenia Gravis.  My-uh-what?  I get that a lot don't worry, just smile I nod.  (That's what I do when someone tries to sell me on the fact that "if you just exercise more you'll be okay", or "if you try this diet you'll never have My-uh-whatever it's called again".)

 

 

I also have hope.  Maybe I'm the rare chronically ill person who clings to that short yet heavy word: HOPE.  I have the word dangling from my 'ultra cool, you wish you had one too' medical alert bracelet.  I have the word bedazzled on a pair of nice comfy sweats (Hey, don't hate!  They one of my best pair of stretchy waist pants!)  More importantly, I have hope in my heart.  Not the organ, thump...thump...thumping away, squishing and swishing the good stuff (no, not boxed wine!) around.  My gushy, lovey dovey, all my hopes and dreams lie here, heart. 

 

 

Right now, I'm on an upswing on the MG roller coaster.  While I'm riding the roller coaster being pulled up to the crest of the drop, I hope the drop is slow, shallow and not as harsh as the last.  I don't dwell on the fact that few of us secure a permanent remission.  Instead I appreciate that today I'm okay.  I hope tomorrow I am.  If I'm not, I'll keep hoping.  I'll pray for the cure, I'll believe in the fact that there are some who are completely in remission, not relying on medicines to keep MG at bay, and I'll hope for that too. 

 

 

I hope that I'm around long enough to see our kids grow into beautiful, caring, overall wonderful adults (as they're all those things, and more as children).  I hope that I'm around long enough to see them graduate from school.  After I surpass that, I hope to see them graduate from college.  That as they grow with their own partner in life they are happy and welcome their own children into this mad world - and I hope I'm around to witness it. 

 

 

Hope. 

 

 

We should all hope.  Hope for the cure to our antagonist: MG, but appreciate the journey we're on, because after all, we are still on a journey.  Without hope, I fear one may become depressed.  Feeling as though you're treading water only to be pulled down deep into the murky waters below, weights clasped onto you pulling you yet further, forcefully into the deep darkness - that's what I fear a life without hope may be like.

 

 

As an aside, my husband got a glimpse of what MG is like when he had surgery recently.  He came back from getting a nerve block and said he couldn't raise his arm the whole way though he tried very hard to do so.  Later he got choked and was unable to swallow (gave the nurses a bit of a fright also!) and had to spit out the liquid they had him try to drink.  As the nurse went over possible side effects:  choking, unable to swallow, drooping facial muscles, muscle weakness, fatigue, etc, I laughed and said "Oh, honey!  You're becoming a Myasthenic!"  The nurse just looked at me a little perplexed (I get that a lot) as he and I laughed. 

 

 

Hope - don't lose it, whether you have a chronic illness or not.  Thanks to those who read my ramblings.

Life Through a Rear View Mirror

Tonight as I drive our kids from school to the doctor, then to store after store running errands I found it hard to keep my eyes on the road instead of pulling to the side to watch them in my rear view mirror.  Life passes quickly and one never wants to watch life from the rear view mirror but tonight I did.  I wanted to watch it in any way possible.

 

Our daughter loves music and dancing and flitting about being the happy-go-lucky little ham she is.  She's an open carefree little girl who wears her emotions on her sleeve.  Most frequently you'll find her with a smile on her small, round face.  Close enough for the smattering of freckles across her nose and cheeks to blur from how closely she invades your space, peppering those she loves with hugs, kisses, smiles and giggles.

 

On the other hand, our son, he is more reserved and doesn't share his feelings freely.  Sometimes it's as if you need to pry apart each layer of coating protecting how he really feels or thinks about anything.  There are a few things you can be certain of - he is very smart, he is very interested in insects, computers and games, he is very protective of those in his circle.  Some things we are just finding out.  Things such as the fact that he, too, enjoys music, and that he has a sweet singing voice - those are welcome surprises.

 

Tonight as he and Princess asked to hear "Roar" I was privileged with hearing him sing wholeheartedly and I found myself watching them through the rear view mirror.  Long after the song has ended, as his sister naps her car seat next to him, I hear him in a singing in a hushed voice "Ha-coon-ave-uh-cah-duh"  I smile and am reminded that these moments pass far too quickly and one day he will realize the Lion King didn't sing about avocados and I won't be rewarded with the little giggles at their expense.  I'll also be reminded that life shouldn't be lived and watched through a rear view mirror, unless that's the only way you can enjoy life going on around you.  Enjoy these moments.  Cherish these moments.  Be thankful for these moments.  And, I am! I am thankful for not only these moments, but for my whole family and all of our moments.

 

And now I bid you adieu with the sound track of the Lion King soaring through your minds only with a little change...

 

Hakuna Matata [Hakun-Avocado (pronounced ave-uh-cah-duh)], what a wonderful phrase
Hakuna Matata [Hakun-Avocado (pronounced ave-uh-cah-duh)], ain't no passing craze
It means no worries for the rest of your days
It's our problem free philosophy, Hakuna Matata  [Hakun-Avocado (pronounced ave-uh-cah-duh)]

Risk Taking and Hopes For Brighter Tomorrows

After reading the article in the link below it inspired me to write a long overdue post. (I'll write another less infomercial post later!). Maybe one day they'll have a cure for us rather than the Russian roulette we play with our treatments which can cause significant and at times deadly consequence!! You know those commercials where they list the horrible side effects and healthy, normal, people scratch their heads and wonder what would make a person willing to risk those?  Well oftentimes it's take the risk or be non-function in vital areas - like breathing. 

That. That is the reason people have to risk such side effects. We take the chance of developing cancer, clots, reactions, and deadly infections in order to simply breathe, walk, chew, swallow, hold our heads upright or simply hold our eyes open.

So yeah.  We are risk takers. We're fighters! Maybe we're not able to jump from planes and other thrill seeking activities risk takers partake in. But every morning, noon and night we open those huge pill sorter boxes and take another fist full of medicines we are taking risks - but we're also clutching onto hope!

Click Here For: New Find in Myasthenia Gravis Research

I Would Have Screamed If I Could!

We all agreed to put the kids in public school this year and while there are things that I simply could not offer them here, at home, there are things I'm not sure are a good idea that are being offered at school. 

 

Music - That's great!  I sing - probably not great though!  Those deer crossing the road today as I, in my best healing-laryngitis-riddled-voice, croaked whilst trying to sing along to some songs were probably thinking OMG that poor dying goose!  But at least it's dying to a fantastic sound track!!

 

Art - Awesome!  Okay I could do finger painting and stick figures awesomely!

 

Snake Wrangling - Say WHAT?!  I'll be right back I have to change my undies!  Who would've thunk that my kid would be the next Snake Wrangler?  I certainly wouldn't have!  For those of you who remember my very first blog there is nothing scarier to me than a snake.  *shivers*

 

Not only did she TOUCH a snake, she HELD a snake!  Not only did she HOLD a snake, she WORE a snake!  Oh.My.Goodness.  She was so happy and proud about it too and our conversation - it goes something like this:

 

"How was your day today?"

 

 "It was really good!  Mommy I wore a snake necklace today!" 

 

*Gasp* "What?  Like a pretend necklace?"  (la la la la, ugh, shiver!)

 

"No.  Today at school I wore a real snake like a necklace!"

 

Clean up on aisle three! Okay not really, but my stomach did drop to my feet, I began picturing that...UGH...shiver...snake, bleck! around my precious Princess' neck!  I have a phobia folks, a true out and out phobia! I had her change immediately and wash down in Purell! I told her how I was proud of her but I just couldn't talk about it any more as she started telling me about all the kinds there were today.  About pink stomachs, skin, OMG!! 

 

"Why don't you wait until Daddy gets home and tell him ALLLL about it!  Save it all up for him!"

 

Later, the next day I believe it was, I checked my email and there's an email from her teacher.  I open it up, about crap my pants!  I squint my eyes immediately as I wonder if there's some sort of home remedy, commercial cleanser, heck some medicine man herbal something or other available to scrub the image I witnessed from my mind.  There on my screen for all of .5 seconds was my baby holding a satan's spawn, pet of the devil, evil creature  - OVER HER SHOULDERS!!  At this point I'm sure her teacher has set out to kill me off!  If ever one could truly be scared to death me and one of those things in the same room would be enough to do it!

 

I squint to blur it out and send the pictures to my mother-in-law who likes them almost as much as I do.  I'm not sure what was on the others as each time I slowly scroll just enough to see her head and copy/paste it as I squint my eyes and hold my hand over the screen only revealing what I need to see - the send/save/share/whatever button!  No way on God's green earth would I ever, ever, EVER hold one of those! 

 

I don't know what is up with those things, people bring them to school to show and tell the kids, one hides out in our backyard for our Hot Rod to uncover, Super Hubby just killed one last night. 

 

Hot Rod doesn't seem to like them either.  Here I was sitting in the backyard on the patio.  I had been looking around and listening intently for any sign of one of those, feeling safe there's none around I relax and stop scanning the grass for movement. Super Hubby and Princess are in the pool.  Hot Rod is out of the pool in search of a snail.  Super Hubby suggested he look under things - like the foam mat by the patio I'm sitting on because they're most likely to be found where it's moist.  He pulls it back stands there looking, then shrieks it's a snake!!  I high tail it as fast as my fat, broken, messed up body could go, he runs ahead of me into the house and slams the door!  That's my boy, he is his mother's son.  I figure at that point it's every man for himself and Hot Rod must've agreed!  Invading the whooshing in my ears are commands to slow down, be careful, you're going to fall!  I didn't care. My best bet is to get inside, where it's safe! 

 

Super Hubby comes in lackadaisically with Princess then heads back out.  This time with both kids en tow intending to do what should be done to every other one of those creatures - kill it.  Princess is intrigued, Hot Rod interested but feeling safer with Daddy, I guess.  One less of those nasty things in the world, but even one is one too many for me!

 

Yesterday he found one by the garage door when he opened it!  Yep, I'd have screamed if I could had I been the one to open the door up to that site!  Our Princess is definitely her father's child.  As I've been blessed with hearing the story of him catching a snake and chasing his mom around with it.  I wouldn't run.  I'd shriek, fall right down in the floor and it'd gobble me all up, or my heart would explode one.  I'm betting on the second - probably before I ever hit the floor!

Nice Time for Chit Chatting

Tonight my husband's best friend got married.  My husband was the best man and our daughter - the flower girl. 

 

While I sat at a table with several friends we rarely get to see, I saw another lady and her son having to sit at a table where they knew no one - I offered that she sit with us.  Her husband was also in the wedding party and I know how out of place you feel when you have to sit where you know no one else.  She and I didn't know each other but her husband and my husband's best friend had been friends since grade school.  If they too were friends, she had to be a nice person.  I thought to myself.  Also, I'd hate for a nice person to sit alone, watching everyone around them chatting with others.  So I asked my husband to invite her to sit with us.

 

She was so very sweet, and I liked her right away, as did our daughter who immediately gravitated to her the night before at the rehearsal dinner.  She sat there, listening to the other 7 of us talking.  We talked about kids, life, and then about what was going on with another friend and I.  (The other friend I speak of has his own medical cross he's bearing - a very difficult one to carry and I pray for him and his family often.)  This kind woman, wondered what was wrong with us.  She listened, puzzled over why I needed the power chair I'm sure, but was polite and didn't want to be nosey.  After a while, others shifted to the dance floor, restrooms, bars, or sat talking to others and she and I began our conversation. 

 

We sat huddled talking for some time and it was then that she inquired.  She listened intently to me - to my story of what was wrong.  She was a very smart woman, she asked - is it in any way related to muscular dystrophy?  YES, it is!  She really wanted to know!  I told her of MG, what I knew of it.  She then asked if it was something they could cure.  When I said no, she felt badly for me - for us all burdened with this affliction.  I wish there were more people like her.  People who wanted to know.  People who saw us as people.  Not to gawk at us, stare and make us feel poorly about ourselves. There is one thing I did do for MG awareness this year.  I informed one.  One more than was informed yesterday, and she in turn will inform her husband and son. 

 

Just thought I'd share.  When it seems others just thumb their noses at us - there are those few, those precious few who care enough to ask us how we are.   Sometimes I really believe there may be angels among us. Those who God places in our paths to help cheer us, give us comfort, or just lend an ear.  Those who care.  Thank you all for reading, for caring, and I wish you all a good, healthy, fun Summer!

I Can Hear, You Know...

It is,  once again Myasthenia Gravis Awareness Month and I thought I'd share a story with you.

My husband's best friend is getting married and I needed something to wear since sweats and lounge wear probably isn't appropriate attire. I think it would be frowned upon to say, hey, I wore my best sweatpants and t-shirt!  So, off to the dreaded store we went...for *gasp* clothes!  

I proudly walked about the store with my rollator.  This is quite a difficult thing for me, for anyone who doesn't already know. I picked comfortable, non restricting items, then went into the room of doom!  The ones where some big fat lady hops into a window wearing the same clothes you thought looked good on the hanger but obviously doesn't look good on her.  She mimics each move you make, even furrows her brow when she sees what you've put on. This room, ah, this dreaded room. I went in already hurting from having walked about, come out red-faced and in more pain. I finally have an outfit I think I can wear, but the problem is -- the color.  White and gray. Everyone knows you're not supposed to wear white to another woman's wedding, but it's outdoors so my husband called the bride to ask her opinion of the color scheme. Getting overheated can land me in the hospital and down here, in the South y'all, it gets so hot sweat drips in places you don't want it to.  You sweat in places you didn't realize you could even sweat from! Too bad there's no other colors available. 

She graciously says it's okay but I'm still unsure. I think she's just being nice and doesn't want to hurt my feelings.  So I grab a couple pair of black pants in hopes that a darker color on the bottom would make it less taboo on the top.  I figured I'd try them on at home because I couldn't try on anything else. I make my way to the counter to check out and I sit on my rollator knowing I look a hot mess.  But I'm proud nonetheless that an outfit is being purchased and I can go home, sit down and take some meds to help me feel better and pay my dues for being out and about. Before that could happen as I sit on my rollator, head in my hands, kids being so good beside of me, hubby paying for these clothes so I can get out of this torturous store I'm rewarded with the cashier figuring since I look dreadful and am sitting on my rollator, surely my ears fell into the floor and I can no longer hear either. 

She loudly whispers to my  husband, "Poor thing, she's hot huh?" (Could've just said bless her heart.  Down here it'd mean the same thing). "Yeah, but she's hurting right now." With annoyance in his voice, he answes.  He wants to get me some meds - yesterday!  My eye is droopier, legs are soon going to attach signs to themselves declaring they're out of commission, and did I mention I'm hot and hurting?  So, she takes it even further, being nosey and really, really wanting to know what the heck is wrong without just asking, which would've saved us all a bit of time she asks in that too loud whisper for deaf people.  I'm sitting right in front of her, instead of addressing me, asking me, she asks my husband, "Was she in a car accident?" I just looked at her, droopy eye at its' finest, but I don't care.  "No.  I wasn't.  I have a neuromuscular disease, Myasthenia Gravis."  "Oh, goodness, you poor thing."  As of she knew what I spoke of.  Maybe she'll go home and google it.  If she can pronounce it, sound it out, or turn on a computer, I don't know but I certainly was glad my 'Must-be-deaf-since-I'm-using-a-rollator-or-slow' self was finally leaving that store.  

Of course, those black pants I grabbed quickly didn't fit.  Isn't that in the laws of physics somewhere or in some unchanging rule of science?  Super Hubby returned them for me another day. He was greeted with Mrs. Busybody who asked, "Oh, is it a bad day for her today?"  No it was a rather okay day, but had things to do and I couldn't waste another "spoon" on that store again.  We only have so many spoons, or energy, everyday.  Most people can walk into stores and try on outfit after outfit, but we can't. Just because I need a rollator and am not very old, doesn't mean I can't hear you. If you wonder, ask me. Don't talk about me as if I'm not right there. I can and will answer you, and if you have any questions I'll do my best to answer those too. 

Don't Step on a Crack!

Do you remember that song you sang skipping and jumping over cracks in the school sidewalk?  "Don't step on a crack or you'll break your Mama's back!"  I don't know about her back, but I did a doozie on my own. I surely must have stepped, hopped, jumped, rolled over and ran across every crack twice!  Maybe I even licked those sidewalk cracks, but was too overcome with glue fumes in my adolescent years to remember.  This is one if the reasons I haven't posted in quite some time.  Another reason is that - I'm a slacker!  

So, here's an update:  Super Hubby is still super, Hot Rod is fantastic, and Princess is wonderful, I'm blessed for sure!  The past year was a very scary one for us all. Gun shot (yes, you read that right!) blood clots, several pulmonary embolisms, back messed up, humiliation, MG treatments...there for a minute or two it was a little more than a little scary! But, that's behind us and now we're trudging ahead with our chins up (kind of) and smiles on our faces.  I can't do all or even as much as I could last year but things could definitely be worse, and I'm so glad they're better than they were. I can once again make the beloved PB&J for Princess and I can, with the help of my trusty rollator make a stovetop dinner (can't do the oven because if that whole pesky lifting or bending forward thing to get stuff in there)!  And while I do have to lean onto the stovetop at times (ouchie!) in order to hold myself up, or sit down as I cook, there was a time not too long ago I did little more than exist.  The world was going on around me whilst living in a hospital bed!  God is Great - I cherish the little things even more now!

My super hubby was shot and no, he wasnt out hunting with Dick Cheney at the time.  He was in our backyard, bent forward and POW!  We live in PoDunkVille, in case you've forgotten, it's a quiet little place. You know the kind, where people say, "That type of stuff doesn't happen 'round here!"  Well, evidently it does. Idiots are everywhere I suppose.  They believe someone was shooting, or target practicing and they must've been a terrible shot with eyes worse than a drunk MGer with triple vision and missed it by a mile or two. Thank God He had Super Hubby bend forward at the time, it skimmed down his shoulder, through the muscles and tissues and lodged about seven inches below that. Police were called, EMTs arrived, he was angry - which is completely understandable I mean who would expect to walk in their QUIET yard and get the surprise of their life in the form of a huge bullet!  Thankfully he is all healed up with only a couple of scars. So. Very. Frightening!  When he got to the hospital, he informed them he had been shot. People start calling others alerting them of a 'GSW, stable condition...' Paperwork shoved my way and all that Man O' Mine is worried about is: "Get a picture! Can she get a picture?!" He was whisked away in a medical blur, people got quiet in the waiting room not so stealthily eavesdropping trying to find out what elicite behavior he was involved in warranting such retaliation. When they heard he was just walking through the yard the chatter picked back up.

Meanwhile, in the back, Super Hubby with a back of steel was stripping. They didn't play any Bow Chicka Wow Wow music, dim the lights, and let him slowly disrobe.  He didn't get a nice dinner and a movie. Nope, they skipped all those bases and headed right to the show me yours base (whatever that is, I forgot. *sigh* I'm old - lol).  They had him lifting, turning, pulling, raising, flipping, flopping all over in three seconds flat!  They didn't mess around! All those people whooshing about in a medical flurry taking care of him! Any other time I might be jealous of him getting that kinda action from others but I was just glad he was okay! 

Our little Hot Rod.  Even with the scene around him, the fear, confusion, people and sounds, our son knew exactly what one should do in such circumstance:  Pray. He prayed for his dad, for others who had been shot, and for the doctors to know how to help him.  An EMT was trying to comfort him, without realizing he was praying, saying how unbelievable a story he would have to share with his own children as I let the gentleman know he was praying.  He is becoming quite the young man. A young man anyone would be proud to call their child.  He is so kind, thoughtful, bright, funny, and cute to boot!!  And he is mine, mine, all mine.  Or at least I try to convince him of that anyway!

Princess, well considering how young she is, she handled it pretty well.  She cried, was scared, but I kept reassuring them both.  Once we saw their Super Daddy, the three of us took a collective sigh of relief!  She she's as funny as ever. That kid makes me laugh so hard sometimes, and she knows it too. Although I don't think she thinks she is as funny as I do.  Just last night, "Let me guess, you're going to laugh because you think I'm sooo cute..."  Could you read the eye roll in that statement?  Lol, she is comical whether she sees it or not, I do ;^) .

Well, That's a snippet of what's been going on in PoDunkVile!