Gambling

I’ve decided to take a risk.  I got a letter in the mail asking my participation in a study at UCLA.   It’s a 50/50 Blind Study.  They are giving half the MS patients the pregnancy hormone, Estriol, and the rest placebo.

So…. Do I drive five hours to Los Angeles four times in one year (I pay for travel) in hopes that I get the hormone?  Will I still be excited to be poked and prodded and MRI’d and take cognition tests even if I get the placebo?

I read about this doctor’s research back in July of last year.  I got so excited because it made perfect sense.  That’s why my MS has taken so long to progress, because I’ve been pregnant so much!  The immune system halts or slows down attacking when an MS patient is pregnant, it’s smart enough to know not to attack the baby.  How cool is that?!?  So even though my first vision loss and numbness began 12 years ago, it didn’t progress much because I kept getting pregnant.

So… I told them yes.  I go to my first study visit next Month.

 

Intermission- A Blog?

I actually googled, “What is a Blog?

I found out it is a regularly updated, informal style of writing.

Hmm….  Informal I can certainly handle.  (I’m even ignoring the punctuation and grammatical absurdities in this very post–which goes against my homeschool Mom tendencies)– Dude, Whatever!   I get enough of that in the daytime.

Informal, for sure.  It’s the “regularly updated” part of the definition that has me second and third guessing the whole idea.  Now I’m starting to overthink it.  Is this blog about homeschooling?  Life with MS?  Raising a barnyard full of kids?  My Faith?  I could even blog about the fact that my parents are about to move in with us full-time… 9 people in one house-  that could be a blog all by itself….

If I’m gonna be me and it’s gonna be real, I think it has to be about all of the above.

Besides, I despise committing to just one thing. That would be so boring.

p.s.  If I ever made fun of you for making a big deal out of your 10,000 steps on your Fitbit, please accept my apology.  I got one for my birthday and I get you now.  I just got in bed and realized I was at 9,852 steps (mostly from two trips to Kohl’s)… So guess what I did?  I walked back and forth from the bed to the closet until my wrist vibrated that I have crossed over.  I am now a step junkie!  My life has changed.

Sensory Processing

  1.  No sudden stuff
  2.  No light stuff
  3.  Tell Me What You’re About to Do
  4.  Slow Down Dude

Those are my son’s “Space Rules”.  If we remember these rules of engagement, he is a much happier boy.  He’s eleven.  He has some definite Sensory Processing issues.  He is also pretty amazing.   He takes his time.  He overthinks every situation.  He is incredibly literal and 100% honest.  If a sound is slightly annoying to me, it physically hurts him.  A light brush on his arm feels like sandpaper.  A faint odor will send him over the edge.  Sudden movement makes him jump out of his skin.  His AMAZING counselor (who I so wish we had found years ago) calls these his “Spidey Senses”.  He likes that.  Each day is like a puzzle with him.  I’m working hard to understand how the pieces all fit.  He is such a blessing and brings joy and a whole lotta “real” to each day.

 

A Cooling Vest -an MS heat lifesaver

The title seems a little odd, I’m sure, but bear with me for a bit.  We live in Las Vegas.  Las Vegas…. In July, the heat rivals the SURFACE OF THE SUN.   Okay, that’s dramatic, but it can be quite toasty.   I have Multiple Sclerosis.  Heat is not my friend.  In fact, a sudden increase in only a couple degrees of body heat can send me into a downward spiral of crazy symptoms…  My vision goes blurry or black, my body goes numb, I can’t think straight, I get wacko dizzy and on and on.  I decided to try a cooling vest.  In fact, it will be delivered TOMORROW!  I am wicked excited to try it.   I definitely won’t be winning any style awards by wearing a grey vest crammed full of ice. It looks like a cross between a fly fishing vest and a bomb.  To be honest, I’m just as excited to watch people’s reaction to it.  I’ll let you know if it’s as awesome as I think it will be.

image

http://www.stacoolvest.com

UPDATE: I love it!!!!!!!

Opening Your Bible

ashleyvjones

What stops you from opening your Bible? If you’re like me, you have a “few” copies in different translations floating around your house. A study bible, a journaling bible, the kind with the devotional in the margins, your kids may have a copy with fun illustrations…so many to pick FROM, so why don’t we pick it UP?  

Some of my reasons for avoiding God’s Word have included; not enough time, lack of understanding, fear of discovering the truth about myself, or worse yet, unveiling something about who God is that will unravel my faith and so I have allowed myself  the cursory flip-through-its-pages on Sunday when the pastor preaches from a “safe” passage or even a sweet bedtime story for my kids, never truly delving into the mystery of these pages.  But as long as I gave myself permission to avoid His Word or keep my interest surface I could never truly know the Author of this beautiful…

View original post 793 more words