Sweat down my back, sand in my crack

It's one of my favorite weeks of the year and it started with a fun new game.  I think I will call this new game, "What's in the Water?" Earlier this week I was watching the waves in the ocean and all the kids playing in the sand (none of which belonged to me, thanks Dad) when I saw something that concerned me.  I jumped up and headed towards the water while adjusting my hat and sunglasses to make sure I had a great view.  I was sure I looked like one of those Baywatch lifeguards moving quickly towards the water.  The only difference was instead of my chest and tight little booty bouncing, I was dragging my leg a little and covering my left eye looking more like a peg leg pirate than a Baywatch babe.  I was already visualizing the headline in tomorrow's "Island Packet"  which would be big and bold reading, "WV woman saves swimmers from a Great White."  As I could feel the word "SHARK" beginning to curl up on my lips and I took a deep breath so I could shout extra loud and then I realized what I should have truly been shouting was "STICK!"  That's right folks, I almost saved all the beach goers on Hilton Head Island from a stick.  I know my mom was so proud.

Like I said, it is pretty much my favorite week of the year.  It's just me and momma, two beach chairs by the water and bright ray of sunshine.  But, I have to say that sunshine is also my enemy.  The heat is x1000 for me.  I need to be in or near the water because being hot means I hurt and my vision gets really blurry especially on the left side.  So while it is a stress free trip (again, thanks dad), my body is in full stress mode.  Electric shocks and tingles are my theme for the week.

The heat sucks but I love a good tan.  As a very wise woman once told me, "tan fat looks better than white fat."  Also, I wouldn't miss a week with my mom for the world.  I hope one day my kids want to go somewhere with just me (but maybe 1 kid at a time.)  My dad told me long time ago, "be nice to your mom one day she will be your best friend."  He was right.  Even though she drives me nuts sometimes (I am sure it's mutual), she is also my greatest ally.

My amazing dad has offered for the past several years to keep my kids so my mom and I could spend some quality time together and I am forever grateful.  For all of those saying, "Where is her husband?"  He is working and can't get the kids back and forth to all their activities and we would hate for their social life to suffer.  Luckily, my dad is awesome enough to do all that running too!

The trip this year was a little different than the past several.  Unfortunately, I now have a little bit of a hard time sitting in the car for hours on end, my body and my head start to really hurt and then I get anxious.  So this year Todd suggested we fly.  PTL it was great!  My bag definitely looked different this time too.  Inside my bag was another bag full of medicine, a hand mirror and a box of catheters.   I'm not going to lie, I think even though I might have been a little embarrassed if the TSA agent would have picked my bag for screening I would have laughed.  Especially if they wanted to know about those particular items.  But no worries, I would have answered politely and offered to let them try the catheters out if they needed to.

Because I get so hot and begin to hurt, we can't spend all day out there by that amazing ocean.  It's a double edged sword for me now, the heat makes me more tired than normal but I don't want to make mom not enjoy the ocean.  Of course she never complains and we still have a great time, but I do feel terrible about asking her to leave the beach and sometimes push myself too far.  The early leave time has led to our new little ritual.  We are in our PJ's by 7pm ready to watch a movie on cable.  I even put in new contacts for this week.  It is very important I have fresh eyes.  It isn't every day you get to save someone from sticks and watch a movie from the early 2000's.  Obviously, the new contacts make it an even better experience!

I try to make it as long as I can by the water.  No matter what my what my mom says, she loves the ocean!  I love to look at the ocean but I do not like to get in it.  Especially when I can't see through it. Today was HOT!  I was miserable and sweating so bad that my sweaty back changed the color of my chair from light blue to dark blue.  I contemplated sitting in the ocean but I for one do not enjoy the sand in my crack!  So on days like today I do the best I can.  Today, I unfortunately had to cry "Uncle" and bribe mom with a "beverage" at the pool. Today I just couldn't do it and I knew I better listen to my body.  My mom never complains or asks for "five more minutes."  As a matter of fact she even acted like going back to her condo, putting on PJ's and ordering pizza was the best idea I'd ever had.   She always understands and never complains but I hate it.  I hate it for her and next time I'll hate it for whoever I am with.  I do not want this disease to affect my family and I do not want it to define me.  It isn't fair though because NMO affects everyone and while it may not be affecting them physically it does emotionally.  Basically what I am saying is, "NMO sucks!"  Actually I'm shouting it to anyone who will listen and I am shouting louder than I was prepared to shout, "Shark/Stick!"

Until it is completely impossible for me to come to Hilton Head with my family I will continue to come.  I hope I always get this "week with momma."  She is amazing, smart and fun.  When I grow up I want to be just like her.