Art (?) and Education

Before I get into a chiari related post, I just have to say one thing. Just received a press release for Flaunt Magazine’s Art Basel group show. There’s going to be a private performance piece by Vanessa Beecroft, in collaboration with Kayne West. Oh Lord, please no! Marina Abramovic and Jay-Z’s were bad enough! I’m so glad I’m not going to be in Miami this year.

Back to the chiari

Fell of the blog last week. Had a bit of time off work, and my body let me know loud and clear that I’m getting worse. I’m getting closer to what I fear the most. Ok, maybe not the most, but it ranks higher than zombies and gremlins.  Spent most of the week horizontal, and staring at my iPhone. Time wasn’t only spent reading Gawker, Wonkette and Blink on Crime. Found myself pouring over chiari pages and searching for any more tidbits of info I could get.

So you’ve now heard my little recap on ailments. Here are some links to support and also much more in depth information on Chiari Malformations. There are so many diverse symptoms and not everyone will have them all. I’ve seen some people liken the diversity to a box of chocolates since you never know which one you’re going to get. Another thing I’ve noticed on chiari support pages, is an abundance of posts by women. This got my curiosity and my googling up. According to the Chiari Institute, women are affected three times more than men. Just what we need, another affliction that leans toward females.

Since so many doctors have little or no knowledge of chiaris, it’s best to arm ourselves with more than a little bit of knowledge. Below are just a few links, but there are many more out there.

links to informative sites and pages dealing with Chiari Malformations:
http://www.conquerchiari.org/index.html

http://www.conquerchiari.org/documents/presentations/SYMPTOMS%20Presentation.pdf

http://asap.org/index.php/disorders/chiari-malformation/

http://www.chiariinstitute.com/chiari_malformation.html

more information and support

https://www.facebook.com/ChiariEncouragement

https://www.facebook.com/ChiariWarriors

information and a great way to explain to anyone what it’s like to live with an invisible illness.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

#chiari #invisibleillness

Gravity Always Gets You In the End

Looking back, chiari and insufficient CSF flow symptoms have persisted all of my life. I just didn’t know what was truly going on. In childhood, it was clumsiness, eye floaters, ears ringing, etc. Honestly, I and probably everyone else just thought I was a wimp. Each year church softball season would come along. At the beginning the coach would try me out at pitching. Could lob the ball over the plate pretty decently for a few throws until my head would ache and a pain in the back of the neck would bring on nausea and I’d be shuttled off into the outfield. As the years passed, I shied away from sports and too much sun.  My eyesight started doing something I like to call “Picasso vision” (maybe this attributes to some of my judgment in men). Glasses never seemed to do the trick. Due to the constant ringing in my ears, I always slept with an old hood hair dryer running on cold. Excuses for every ailment/symptom kept piling up.

2011-2012 was when everything finally came out in the open. My balance was so bad that I couldn’t hide it any more. Jeff moved to Switzerland for work and on my first visit to help get him settled in, I lost physical control. The secret was out. Had no choice but to start delving deeper into my own research. Have a wonderful GP, but he had never dealt with any of this before. He sent me to multiple specialists to rule everything out from eyes, ears, innards, eegs, ekgs, pet scans, you name it they stuck me with it, shocked my muscles, strapped me in contraptions, and pretty much made me feel like a magnet from all the MRIs I had. Finally was sent to a neurologist who dealt with people like me with chiaris, tingling appendages, etc. Everything also seemed to sound like MS. I thought this was the beginning of truly sorting the mess out. WRONG. Little did I know specialists aren’t so special when they do not read the scan results. I could have been fully diagnosed right then! Instead, this ass decided since I’m a female and my significant other is in another country, this whole thing must just be a case of nerves and all in my head even though he acknowledged I had a chiari. He just thought it wasn’t big enough to matter. One important rule on chiari malformations is size does not matter. His solution was to just drug me up, but luckily the meds made me walk into a closed door and I stopped them immediately. Stress may have made my symptoms worse but were not the cause. Little did this man know, I eat stress for breakfast. Mr. Specialist sent me all over again to another round of doctors and other neurologists. NO ONE READ THE TEST RESULTS! I spent over a year being shuttled around and told it is still all in my head. There are so few doctors that actually know about (or are well informed about) chiari malformations or dorsally angulated odontoid processes and those that do, do not always know how to deal with them. 

Hurricane Sandy hit and closed NYU Hospital, and I used that as a way to just stop. I gave up. Months passed and I grew worse. Jeff finally put his foot down and made me go back to my GP and my pain management specialist and that was when I finally truly found help. Dr. Jesse Weinberger at Mt. Sinai was my savior. He listened. He didn’t dismiss me because I’m a woman. HE READ THE TEST RESULTS! By this point the files were as thick as the Gutenberg Bible and it did not even make him hesitate. He also looked at all my scans and pointed immediately to the bone poking into my brain, platybasia, and the chiari (which did turn out to be pretty big). Then with further tests, he found more. Finally the truth is revealed! It was all in my head all along… and my spine, and my skull, and my brain. Oh, he also pointed out that gravity is a big key in all this too. Jowls and boobs aren’t the only things that sag as we age. My brain is and will continue (until I give in to surgery) to slide further back into my spinal column and keep impaling itself on that lovely bone.

I will always be indebted to Dr. Jesse Weinberger, Dr. Lawrence Adler, and Dr. Vinoo Thomas. They care, they listen, they never gave up on me, and they are the embodiment of what you want from a doctor. They are the best of men.

A really good read

http://www.amazon.com/Women-Asylum-Voices-Behind-1840-1945/dp/0385474237

Picked this up eons ago, but it stuck with me. In some of the case studies, women were institutionalized based purely on a man’s word. Some were told, it’s all in their head. Sound familiar?

#chiari #invisibleillness 

Art Always Makes the Day Better

This is a non chiari post, but as much as it’s a part of my life, so is art. No matter how off I may feel, looking at artwork always seems to brighten my outlook on everything.  So here’s a little bit of brightening.

I’ve watched Ruth Marshall’s work develop and grow over many years from rivets, to chandeliers, to sculptural cast pieces and now knitted pelts. She just has a way of bringing her world…our world…into her creative process and giving back a piece of beauty. Recently she posted a pic of 5 pelts of Leadbeater’s Possums that were soon to depart her studio, and they just pulled me in. Had no idea of the history of these small creatures. These little fellows are going extinct and need our help. Ruth has more information on her site http://ruthmarshall.blogspot.de/p/australia.html and also http://leadbeaters.org.au/

Check out more of her work at: http://www.ruthmarshall.com/

Damn she’s good. Ok, she’s better than good…she’s brilliant, and it’s even better in person.

Images: 

Two Tigers and a Jaguar. (C) Ruth Marshall, 2012. University of Maine Museum of Art, 2012 “Vanished into Stitches” 

 Leadbeater Possum #2. (C) Ruth Marshall, 2013. 14.5” X 6” (36.8cm X 15cm)

#ruthmarshall #leadbeaterpossum

I am, Invisible Woman

Ever heard of an “invisible illness”…well, a chiari malformation is a member of that party. Migraines, fibromyalgia, and many others are also included in this group. You look fine (well sometimes bedraggled by the end of the day), but you’re battling your body on a daily basis. Every chiarian can have a multitude of varying symptoms.

My list is longer than I want to submit you to, but below are a few of the select symptoms:

left-side of the entire body (including my face) numbness

inability to feel my hands and feet

spike drilling through the top of my head

back of brain being squeezed

feeling like my head is set on a pike

difficulty swallowing and sometimes feel like throat is being squeezed

vision fading and at times I feel like I have chameleon eyes

eye floaters

major balance and dizziness issues which result in falling down

tinnitus

exhaustion

and the list goes on…

Most important though, I am slowly becoming paralyzed. Even though at times this is difficult, I try to remember, there are many people worse off then I am.

Commuting into work in NYC isn’t exactly chiari friendly, and it’s really not too partial to those with “invisible illnesses”. Here’s a little insight on my daily transport to work:

Just imagine a subway trip with only one or two of the above symptoms. That’s me the wobbly, cane toting – girl (not feeling much like calling myself a lady today, since I truly wanted to smack a subway etiquette offender with my cane). Struggling to see straight, not fall off the platform, and navigate stairs. Oh, there are elevators in some of the stations. They’re there, and you can use your nose to find them. Usually someone has designated them as their private loo. Also inevitably by the time I get out of the subway car and amble over, there is a long line of people who could readily take the stairs but well…there’s no polite way I can describe these people, so I won’t even try. I’ve seen people in wheelchairs nudged out and made to wait for the next lift by this lot.

Part two of our adventure: Desperately searching for the elusive seat on the subway… every   single   day. Here we go. Wait on the platform. Crowd starts to build. Subway pulls up and the doors open, and the seas don’t part. As people try to get off there’s always some idiot that rushes like a linebacker to get on. These are  the body slammers. Try to sit down. Here comes the side-swipe. Wham! Or there’s the full body check. Oof! Canes don’t matter. Doesn’t matter when I catch myself on a pole before I hit the floor. All that matters is, they get their “Precious”, that damn seat. There’s the other classic offender: the hipster douche dude that’s a siddler. They nudge, they shove, till they get to just the position they want by the pole and wrap their entire body around it, not caring who has their hands already on it. Another one that tops them all is the person that asks, “Why do you have a cane? You don’t look like there’s anything wrong with you. Chiari? What’s a chiari? I’ve never heard of that before. I bet if you just tried yoga, you’d get better.”

Then there’s the best one…the one that always surprises me. I’ll be standing in a packed car, swaying or just hanging on to a rail, and I’ll feel a hand on my arm or back. Glance down and there’s a seated young lady smiling at me. “Would you like to sit?” These rare moments give me a little bit of hope in people again.

Maybe I’m not always invisible.

#chiari #invisibleillness

Side note: Sometimes you just have to laugh. Can make the day so much better.

"Son of the Invisible Man" from "Amazon Women on the Moon"

Hello world,

Starting this blog with mixed emotions and even a few jumbled thoughts. Over the past years (in actuality, turns out it’s been all my life), I’ve been battling something my doctors could never quite sort out. I finally have some answers on my health. Turns out the lot of what I have, is a chiari malformation, platybasia, missing/detached right vertebral artery, dorsally angulated odontoid process (C2), brain aneurysm, and stenosis of carotid arteries. Long list to simply put, my brain is sliding back into my spinal column and cutting off spinal fluid flow and a bone is poking into my brain/brain stem. This wonderful perfect storm of malformations is making living in New York quite an obstacle course and a balancing act of challenges. Anyway, this will be a little place where I can get things out in the open, share a little information, and maybe find a way to give back something to the world.

#chiari #invisibleillness