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Thursday, September 25, 2014

Scared to the Bone! -- Chiari Awareness Month

Hi everyone!!!  After a brief holiday to the beach, I am finally back in crafty blogland.  I am so glad to be back and see all the amazing things you guys have been creating while I was gone.   As for myself, I couldn't be away from crafting while on holiday, so my mom helped me load up several of my art supplies and off we went to surf and sand.  While I was there, I created this piece that serves a two-fold purpose for my artistic heart.  First, it is a piece that I created to represent the emotions I've gone though over the last couple of years of my Chiari illness (more about this at the end of this post).  As I stated in my last post, this is Chiari Awareness month and I wanted to share my story with you to educate those who aren't familiar with the illness and provide support to those who do.  My sincerest thanks go out to all those who have been passing my story along on Facebook and have been visiting from Pinterest.  To those of you whose lives have been affected by this illness (either by having it or loving and caring for someone who is suffering from it), my heart goes out to you and I offer you some hope, because there are things out there that can make life better.  I'm living proof of that.  Next, on a cheekier note, this piece also is a representation of the devilish part of creative soul who loves spooky Halloween :)  For that reason, I am also entering this tag in Frilly and Funkie's Haunting Halloween Challenge.



So here's a little more about how this tag came to be.  I was thumbing through my Halloween supplies and found some stickers by My Minds Eye.  One of them said "Scared to the Bone" and as soon as I read that it resonated deep within me.  This phrase exactly represents how I felt when my neurosurgeon, Dr Paolo Bolognese, described the surgical option for my secondary condition (retroflexed odontoid) a couple of years ago. (If you are interested in why this was so terrifying to me, you can find out at the end of this post when I update you on the latest specifics of my Chiari journey.)  It also was such a cool, scary Halloween phrase.  So I grabbed my favorite Tim Holtz Halloween stamp of all times (ok ... so far), this awesome skull from his Apothecary set and off I went to stamp.  I must confess, I planned to use the My Minds Eye sticker on the tag ... however I ruined it by trying give my sometimes aggressive vintage touch.  Sigh.  But I found a wonderful alternative that allowed me to add the sentiment anyway.  Check it out -->

Scared to the Bone Tag Details:

I began this tag by stamping the skull with black archival ink onto watercolor paper (it was the paper I had on hand at the beach).  If you are interested in stamping on watercolor paper, you out to check out some of Tim Holtz's videos or take his Creative Chemistry class.   He's terrific and discussing how stamps and different inks react with different paper.  I used Antique Linen Distress Ink on a blending tool to give the skull some aged dimensionality around the edges.  I cut out the eye sockets of the stamped image (I knew I wanted the background of the tag to show through the eyes) and used a Black Soot Distress Marker to outline the skull and eye sockets to make the image pop a little more.  And this is where I found an eerie way to add my "scared to the bone " sentiment.  I found all of the words using some of Tim's regular and seasonal chit chat stickers!  I aged them a bit with whatever brown was on my brown blending tool at the time and then outlined them with a black archival pen (creating somewhat barbed edges to the outlines).  Now this guy is ready for a spectacularly spooky background.


Ok ... how do I create a suitably scary background for this amazing guy?  While playing around with my Distress Stains at the beach a couple of days before, I found out that I really like the striated effect the stains give you when you apply them directly to the tag in vertical lines.  I enjoyed layering these colors on top of each other in this striated pattern.  So, for this tag, I started out with a Size 10 Ranger manilla tag (perfect for some of your larger stamps), and covered the entire tag in Ripe Persimmon Distress Stain in vertical stripes from top to bottom.  Some stripes were more saturated than others.  Cool effect on its own.  However, I decided to continue to layer some colors.  On top of this vibrant orange color, I used a darker color but in the same warm field of tones ... Vintage Photo.   With light pressure, I started from the outside edges of the tag and added some Vintage Photo Distress Stain vertical stripes.  It add a yummy layer of translucent brown color over the orange and deepened it.  Wow!!.  The stripes are perfectly vertical.  This almost gives a sense of movement ... like flames.  I left the plenty of of the orange peeping through in the middle, especially where I wanted the eyes of my skull to be.  Finally I added some dark Walnut Stain Distress Stain around the edges of the tag (again in vertical stripes) to draw your eye to the center of the tag. 


To finish this tag I grabbed a couple of Halloween stamps from a different Recollection stamp sets to add some spooky branches all the way around the edges to give this an almost Haunted forest look.   Loved it!!!!  I grabbed a piece of scrap strip of watercolor paper and unevenly applied some Peeled Paint Distress Paint directly to the paper.  After drying the paint with a heat tool (very impatient crafter), I stamped the word "chilling" on the painted surface in black archival ink.   I gave the letters a florescent orange shadow with a gel pen and gave the letters a coat of Glossy Accents.  After everything dried,  I tore the side edges of the strip of paper and distressed the top and bottom edges with Tim's Paper Distresser tool.  I grabbed my Walnut Stain Distress Marker and added the dark brown ink to all the torn edges.  Since the Distress Paint is water resistant, I could wipe the excess marker ink off the painted surface with a baby wipe to leave some great distressed edges around this sign.  Finally, I added a gear and chain from my stash that I aged with some alcohol ink.  I really looks spooky on this tag because it almost reminds me of a saw blade.  YIKES!  And that's it for this really fun tag.  My mom isn't a big fan of spooky stuff, but even she liked this one.  It's hanging in the living room :)



For those of you who are just interested in the crafting details, thanks for dropping by and sharing in my latest creative journey.  I'll leave you with another view of the completed tag.  For those who might be interested in some of the details of my latest steps in my rather complex health story, keep reading. 




A Chilling Path in my Chiari Story that left me Scared to the Bone!!

Warning ... I do go into some anatomical detail here about my surgery.  If you are squeamish, please feel free to leave and drop by later when I'm not being such a scary being :)

When I went to New York for the first time (November 2011) to meet with Dr Bolognese at The Chiari Institute, I was prepared to hear that I had a Chiari Malformation.  Radiologists had already recognized that on my latest CSPINE or cervical spine MRI.  However, what I was not at all prepared to hear was that I had what Dr Bolognese called a "Complex Chiari".  That means I had secondary issues that complicated my already problematic Chiari symptoms.   The major secondary issue was the retroflexed (or backwards-leaning) odontoid bone.  This bone is the primary support for your skull on your neck.  My bone wobbled due to its supportive connective tissues that were over-stretched like an old rubber bands. The bone at times was compressing my spinal cord and pushing up into my brain stem.  Hearing that news was a blow.  I knew I was having serious problems, but this was explaining a lot of the pain and other weird symptoms that I had all over my body.  The nerves that were responsible for sending messages to all of my systems were being impacted by this wobbly bone. 

Ok ... but that was not the worst part.  The next thing was that Dr Bolognese recommended that I have surgery.  He gave me not one surgical option, but two (always a fun choice to make).  The wobbly bone that supported my skull made my skull unstable.  While trying to correct the Chiari problem, if he did a traditional Chiari surgery (removing a small part of the skull to make room for all my brain), it would require that he cut my neck muscles.  This would significantly weaken a major part of my support system for my skull and I may have not been able raise my head after surgery.  That was when he suggested I have the less-invasive but longer surgery where he would actually remove the part of my brain that was stopping up my cerebral spinal fluid.  That was pretty scary ... but the second surgical option sincerely scared me to the bone. 

The second surgical option was where he would take care of the Chiari AND surgically add a titanium support structure to my spine and skull (also know as craniocervical fusion CCF or cranial spinal fusion -- CSF).  To keep my skull from wobbling and sinking down because of the lack of support, Dr Bolognese was going to screw titanium rods, one on each side of my spine, to the back of my skull.  The top of each rod would be screwed to the skull using four screws.  The bottom of the rod would be screwed to C1 and C2 vertebrae (and perhaps on down to other vertebrae if needed). From friends who have had this surgery, the weirdest part for them was trying to get used to feeling the screws and rods under the skin of that covers the skull.  For me, it was the fact that the rods would be supported by ... here is the truly horrific part ... cadaver bones.  Yep ... and now you understand why I was literally "scared to the bone" of this surgery.

I just couldn't make the decision between the two surgeries.  At that same time, my father had given days to live due to epilepsy brought on by Alzheimers.  He died right before Thanksgiving at the time I was trying to process my diagnosis and surgical options.   I gave the decision back to Dr Bolognese and he decided to see if we could get by without the fusion surgery.  I admit the Chiari surgery was awesome.  No migraines since he performed that surgery in January 2012.  Amazing!  However, as you saw in my previous post, I have since had some very serious nervous system problems and needed the fusion surgery.

This is where there is hope ... in the last two years, Dr Bolognese has augmented and perfected a surgical strategy that until recently was used for people who could not have that the rods fasten to the exterior of the back of the skull (for example, for people who had been in major accidents resulting in skull trauma).  The new fusion surgery attaches the rods to the base of your skull where is thickest on the bottom of the skull called the "condyls" (just to the right and left of the opening at the base of the skull).  The the vertical rods are attached at the top with screws through the skull's condyls.  Then each rod is screwed to C1 an C2 (one vertical rod on the left of the spine and one on the right).  A horizontal bar is attached between the C1 screws.  Another horizontal bar is attached to the C2 screws.  If you are really interested in medical stuff, or you are considering fusion surgery yourself, here is a link to Dr Bolognese's talk (last fall) about this new fusion surgical procedure.  Another warning ... his includes actually surgical pictures.  Not great for dinner time viewing :)

Because the rods are not attached to the outside of the skull, you don't feel the weird hardware at all externally!!!  Oh, I am aware of them internally.  It's not bad though.  I'm getting used to the feel of it.  The other fabulous this that it does not require supporting cadaver bones!!!!!!!! 

After surgery, I was required to wear a cervical collar for three months.  At the beginning of September, I was able to start weaning myself off of it. That is why I went to the beach.  I went to a place where I could relax and look at beautiful things.  It helped me find a place away from the computer and email and stress to test how much mobility I would have and a warm place for my neck muscles to stretch and relax.  Many thanks to my extended family, cousins Carol and Carroll, who graciously allowed my mom and me to stay in their beach house for a few weeks.  They came down at the end our time at North Myrtle Beach, SC and we had such a marvelous time together.

I seriously have never felt better.  I honestly feel like me again.  I still have permanent nerve damage and I will be starting physical therapy to deal with things at the beginning of October.  I am finally back on my own in North Carolina.  My mom ended up with bronchitis after we returned from the beach and I got to take care of her last week (it felt good to help her for a change) before heading back to my own home.  It is great to be home and taking my first steps back to my own life and creating a new "normal" journey for myself.  I am grateful to God for walking with me each step until now and know He continues to walk with me each step into the future.

Well, that's about it for now.  Thanks for letting me share this with you.  God bless you all -- Mary Elizabeth



7 comments:

Cec said...

What an awesome tag and very relative to Halloween but still inspired by your incredible story. Thanks you for sharing the story and I wish you continued improvement. Thanks for joining us at Frilly and Funkie.
Hugs!
Cec

barbarayaya62 said...

Mary I read your whole post! of course I did not understand what you wrote 100% right but 85% !!! You know I speak bad English! I can say that I'm sorry live so far away, I'd really like to chat with you and help you through difficult times! I am happy to meet you and I'm happy to be your web friend! I think of you often, I was going to start worry! I not seen you for a while on Pinterest! Your tag is gorgeous and your artistic journey it mixes with your life and it is incredibly fascinating! Goes straight to the heart! A big hug!

BArbarayaya

Karen Garrard said...

What a brilliant tag Mary Elizabeth! I have to say the skull stamp is also a favourite of mine. Love the background too. I read your story and I just want you to know we in blogland are all walking right beside you. Know in your heart I am thinking of you and I'm glad to hear you are feeling your self again. Hope your mums better. So sorry for your fathers passing during a difficult time. I hope you continue to gain all the strength you need to continue feeling yourself again. Karen.x

Brenda Brown said...

Oh wow Mary Elizabeth, I can see how your fabulous tag emerged from your experiences. I knew you had been in hospital, but now I understand the issues and difficulties you have had. You are an incredibly brave and resilient person and provide hope for so many people. I haven't been touched by Chiari but by other debilitating illnesses in the family so I really feel for you with the worries and decisions you have had to make. But what is so lovely is to read that you feel more like your old self again and are obviously well on the road to recovery from your surgery.
It's wonderful to have you back.
Take care.
Hugs Brenda xxx

Buttons said...

You've clearly poured so much of your experiences into your creativity and this shines through here Mary Elizabeth. I love how the depth of colour you've achieved in your stained background resonates with the awesome skull. Thank you so much for joining us at Frilly and Funkie. Jenny x

butterfly said...

So thrilled to hear that the surgery has been a success - at least to some extent - after all that trauma. It sounds like you had a truly restorative time at the beach, and I can understand how it must have felt to be able to take care of your mom for a change.

On the crafty front, your tag is truly haunting. There's such depth to the blood red, fabulous stamping, and the skull is an all-time favourite of mine. Wonderful!
Alison xx

Inkypinkycraft said...

a wonderful make . Thanks for joining us at Frilly and Funkie x trace x