Divulging my details……

I decided it was time to take my readers on a journey.  The journey of who it is to be me and some of the oddities I come with. Arnold Chiari Malformation has colored my life since I was born, I just didn’t know it had a name until I received my diagnosis when I was 36.

I have no idea what it’s like to close my eyes and see nothing or darkness.  I have patterns of light that play on my closed eyelids.  This can make sleeping or daydreaming pretty challenging!! Image closing your eyes and seeing this pattern over and over and over again.

I dyed my hair pink prior to neurosurgery much to my mother’s dismay.  I figured I would celebrate it before the surgeon shaved it off.  My neurosurgeon was quite surprised by it the morning of my surgery.
 

My greatest coping tool is my PSP (Playstation Portable); but not for the games.  I love the multimedia capabilities of it. I can watch movies, videos, listen to music, store photos, and surf the net. Yes, it’s the Hannah Montana version!!! Yes, I do realize I’m 40 not 14!

The weirdest place I have ever have been given an injection for pain was at the Lady Gaga concert. No, it wasn’t in the bathroom, it was in my seat just prior to the concert. I didn’t want to miss Lady Gaga’s entrance!!  Considering what some people were wearing, showing the top of my buttocks was no big deal.

I am known as a zipperhead. The scar on the back of my head resembles a zipper; therefore, post decompression Chiarians are called zipperheads.  I am considering getting a tattoo of a zipper around my scar.  This is not a photo of my scar but it is just like mine.  I know that zipperhead is also a derogatory term; but, Chiarians view our zipperhead scars as a badge of honor.

Even though I complain ALOT about the fact that plenty of doctors have no idea what Arnold Chiari malformation, I secretly like having to explain it.  It makes me feel smarter than doctors.  I like using the medical words when describing my symptoms. 

The stupidest thing I have ever heard a doctor say. “You didn’t need to have neurosurgery.” This was two years after my surgery and he did not have any of my records (including my MRIs) from before my surgery.  So he had no way of knowing how clogged my spinal canal was. QUACK!!

One of my greatest possessions is a picture that a friend colored for me.  I am still irked that people don’t understand what Chiari is.  It’s not like I wear a ribbon and people would know what I have. Anyone that sees a pink ribbon instantly thinks Breast Cancer.  My friend, Terry, made me my very own ribbon.  She chose the colors and wrote me a long letter about what each of the colors means. 

Due to the confusion and brain fog, I’ve done some pretty silly things.  Like put the cereal in the fridge and the milk in the cabinet.  Or I will use incorrect words, like lunch instead of love.  One of the silliest of these was when I spit on the bathroom floor instead of in the sink after brushing my teeth. I stood there looking at the mess on the floor and wondered why on Earth I’d just done that.

So the next time you are having a really rough day, just remember that we all have challenges, they just come in different flavors and colors.

Sending Thank Yous across the miles…

So when I arrived back to Colorado there was a box waiting on me.  The box wasn’t very big, but in it were the perfect treasures! Terry is always such a great gift picker!!!! Even Ma commented that Terry had chosen just the right gifts for me!
Pooh is soooooo cute!! He and Piglet are baking cookies!!!  It is so adorable it moves, plays music and produces a wonderful smell! It is BEYOND adorable!

Plus a small Vera Bradley case that matches my others!! And a sparkly pen!!!! What more could this girl want?!?!? Terry also sent me a new family photo.

Terry, I love you and miss you sooooo much. I can’t wait to get to San Antonio for a visit! THANK YOU great big bunches! You really do pick great gifts, but the gift of you friendship is truly priceless as it’s one of the greatest gifts I’ve ever received. Thanks for being my friend.

Racking up the miles……..

You will notice I’ve changed my blog and my blog title. I think it’s more fitting of what is currently going on with my life right now. To date the mileage tally is over 5500 miles.  Including today’s 650 miles and 4 states Oklahoma, Texas, New Mexico and Colorado. 

As I am driving through rural Oklahoma and Texas the memories of my childhood came flooding back to me.   My grandparents had a farm in Seiling, Oklahoma which a cow, pigs, and chickens. 

Passing all the grain elevators and silos (the one below stands in the middle of town) made me nostalgic for days gone by. 

It was a great reminder of rural America and what it means to own and work the land.  It’s a great testament to the hard working spirit of some of our greatest citizens.

In western Oklahoma and the panhandle of Texas there is miles and miles of open country.  I felt so alone, yet so free.  There were long stretches where I saw no other cars or people.  Just land and sky. 

Feeling so small in such a big world.  But I felt so connected, like I belonged.  That even for just this year the road, the entire country is my home.  

The miles of flat stretches of land began to ripple and roll on the horizon dawns beautiful snow crested mountains.  As my car climbed the hills and hugged the curves, I realized again  what an amazing place I get the pleasure of living in.

As the sun began to set over those snow capped peaks I felt like I was racing to beat it home before it stole the last slivers of light and the moon graced my path. 

Even though I miss my husband terribly, my life is as rich and full as the land that passes under my tires as I roam like a gypsy.

Celebrating Mom…………

Today is my Mom’s birthday! My Mom was raised in the sticks and oil slough’s of south central Arkansas.  Smackover is a small oil boom town that still boasts only 1 stoplight which stands in the middle of the   intersection.  Unfortunately, my Mom experienced a devastating fire her Senior year in high school and lost most of the photos of her as a child.   Right after high school my Mom married my Dad, even though they had only known each other for about six months.  Dad was in the U.S. Air Force when they married and Mom immediately moved from Arkansas to Wichita Falls, Texas.

Nine months after marrying Dad along came my sister.  Four years later along came me!! Now this has been the biggest challenge, er, I should say I am the biggest challenge of my Mom’s life.

As you can see by this picture, I was quite a handful when things weren’t going my way.  And they didn’t go my way frequently! 

My Mom and her Dad looking on in the background.  

My Mom was raised to be a quiet southern lady who never causes a ruckus.  But when she received her diagnosis of Breast Cancer I saw a side of her that I never knew existed.  I saw a fighting spirit in her that showed the world that she was completely capable of beating this nasty disease.   Just as she was finishing her chemo treatments she discovered she had to have open heart surgery, twice!!!

I saw my Mom transform from this quiet woman to this pillar of strength. It is because of my Mom that I am as comfortable as I am with my own illness.  She truly set the example of how to live gracefully with a sickness you can’t control. 

 

My Mom is an avid fisherWOman!! She can even outfish my father on most occaisions!!!

My Mom also loves watching wildlife.  Their backyard is a testament to her love of squirrels, birds and rabbits.  They both enjoy hours on their back porch watching nature.

 

I know that my Mom’s greatest blessing is her family (not sure if I qualify as a blessing but that’s my own fault!!! :) I am certain that her three grandkids and her lil great-granddaughter are the greatest joy in her life. 

Happy Happy Birthday Mom!! I love you great big bunches. Thank you so much for being my Mom and such a great example for me.  I truly appreciate all that you’ve done for me and all the family!!!

HAVE A GREAT DAY!!!!

Casing the pillow?……….

Since I have so many problems sleeping I travel with my own pillow.  We even recently bought me a new pillow so that I would have a fresh, fluffy new one.  But we had only bought a plain white pillow case for it. This quickly became a problem!! I almost left it in a hotel room twice and then the inevitable happened…..I actually left it in a hotel room.  It was easy to do since it had a white pillowcase like the other hotel pillows.  So I bought a new pillow again and since then I have been on the prowl for a new pillowcase. I was hoping to find a brightly colored one so that it would be easily seen.  Well, this search has been fruitless.  So yesterday when Mom and I went to Joann’s I found the most adorable fabric and I made two very bright cases for my new pillow. 

I have a great pattern for making pillow cases.  It’s super easy and really quick.  As long as you can sew in a straight line you can make this pillow case.  It makes a great gift for kids and teens!  One year for Christmas I made pillow cases and matching pjs for my nieces.

Standard pillowcase: 26” (3/4 yd) x 42” (width of fabric).
King pillowcase: 36” (1 yd) x 42”
Plus 9” (1/4 yd) x 42”

After cutting fabric, roll up the larger of the two fabrics leaving an 1”-2” for sewing. I like to pin each edge (edges only!) to hold the roll in place.

Place the roll on the right side of the coordinating fabric, lining up the cut edges.

Roll the coordinating fabric around the roll and line up all three edges. Think about the roll being a wiener and the coordinating fabric being the bun.  Pin to hold together, if desired. 
 

Sew down the length of the fabric.  Remove pins from each edge of the roll.   Turn the entire thing inside out…or rather right side out.

Sew the side and the bottom closed and PRESTO pillowcase done! I prefer using a french seam so that there are no raw edges.

 

I don’t think I am in any danger of either of these pillowcases being accidently left on a hotel bed because they blend in with the white pillow!!! It took about 30 minutes to make both pillowcases. They are also cheerful which is appreciated since I have so few creature comforts of my own home.