This is just my little place in the world to blog about whatever comes to mind. I plan to review books, movies, music, bands, bars food and restaurants, along with my wife, step sons, marriage past and present, anything is fair game! and AVM's
Absolutely nothing to report.... from the ol' AVM news.... anyway.
I am writing this at 5:40 am.... but it has been a couple of days with Nothing to report. so I guess you could say "Hooray!" For those who do not know... AVM = Arterio-Venous Malformation.
I have one... it popped(3 times)... In my head...I basically had a stroke... It left me basically paralyzed on my right side. My leg made good strides in therapy... my arm did not. So today I have some movement in my leg... my arm basically just hangs there. (don't get me wrong... I have feeling in my right arm... I can move it, all though it is limited to your just up and down type movements.
My selling is terrible... Thank god for spelling check.
What’s the first thing you do when you get a new medical diagnosis? Or even before you get a definitive diagnosis, but you suspect something is wrong? Or someone mentions some illness to you and says you might have it? Or you keep noticing a distinctive symptom?
That’s right; you google it.
The internet can be a dangerous thing in the hands of a fearful patient. The medical community used to keep people in the dark “for their own good” when they had cancer or other life-threatening diseases. The god-like doctors of that era have been replaced with patient advocates and rehab settings where we ask patients what their goals are. So while being informed and educated about your disease can alleviate fears, and help patients feel in control of their health, it can also be very dangerous. Being in the dark has its benefits. In an internet-accessed world with webMD at our fingertips, no one has an excuse to be uninformed about his/her health.
After I had my diagnosis, I still had months to stew, months to wait for my June 21st surgery date. I was at the time working as a preschool assistant teacher. The kids went down for a nap after lunch between 12:40pm and 2:30pm. The lights went down, and the kids actually slept. There was very little I could do, sitting there in the dark. Sometimes we tried to prepare for art projects, but next to the quiet breathing of preschoolers, the sound of cutting construction paper, or sorting beads magnified in the darkness. We had blinds on all the windows, and a black-out curtain on the door; even the bathroom light was off. There was no way to read, to journal, to see knitting stitches – not that I could knit – so I turned to the computer each afternoon.
I learned about my treatment options, the incidence of AVMs, the possible outcomes – favorable and disastrous. While statistics on the prevalence of AVMs vary greatly (from 5 to 613 per 100,000), by some estimates, AVMs are as common as cerebral palsy. Yet no one has ever heard of an AVM. They’re about 1/6 as common as aneurysms, and people have heard of those. I knew it wouldn’t be likely to find an AVM support group in on-line, let alone in person, and I needed to distract myself from statistics such as “4 in 100 people with AVMs will have hemorrhaging strokes in a given year”. I had 2-3% chance of bleeding each year. The mortality rate from a initial bleed is about 10%, and this increases with subsequent bleeds. I needed to stop thinking of my AVM as a time-bomb. I started referring to the potential hemorrhage as “blowing a gasket”, hoping to inject some much-needed levity into the situation. It didn’t work. My mother still couldn’t use the words “brain surgery” to talk about what was happening.
One day, while the children in my care were dead to the world, I found a website hosted on generous bandwidth by the University of West Georgia by a man named Bill Maples. (http://stu.westga.edu/~wmaples/aneurysm.html) This is a data-free site. It is a support network for families, friends, sufferers, and survivors of AVMs and aneurysms. It consists of narratives written by the very same folks in need of support and camaraderie. I latched on dearly. Too many stories ended in the death of a loved one, including young children. Too many stories chronicled the ongoing struggles faced by people discovering new neurological deficits and unending complications caused by the AVMs and aneurysms.
I sat down that May afternoon to compose my own narrative. What follows is an excerpt from my AVM narrative I titled “My Summer Plans”:
School can be both a respite and a dangerous place for my thoughts about my impending surgery. While I’m active, I have virtually no down time, and I have to devote all my energy to the school day of a three- or four-year old. They captivate me from about 7:55am until 12:40pm, and after they’ve all brushed their teeth and used the toilets, they hit their nap mats. They get ready to slide into dreamland for about two hours, and I’m left to my own devices, since comatose children require little or no upkeep. And while I’m here, listening to their soft breath, quiet lullaby music, and the gentle whirr of the computer, my own mind has time to wander. Though my work here allows me to escape the reality that goes beyond the innocent thoughts of a preschooler, I still dip my toes in the Real World. The phone rings and it will be Evelyn from Dr. Zager’s office, scheduling my fMRI. I will scoot by second grade and think about Danny, son of the famous vascular neurosurgeon who will slice into me this summer. And sometimes, all it takes is some idle time in the classroom. Two hours is a long time to read, or work on any project in the dark on 18″ preschool tables. It’s even long to stare at a computer and do mindless e-mailing and google research about foam cheese hats. All I need is to type “AVM” into google, look at my daybook and see some medical appointment scrawled in. It all comes racing back.
I will include more from this narrative in the next post. I would rather include it as “source material” than paraphrase the key plot elements, because it captured the fear and uncertainty of what lay ahead in that moment. I can reflect from the other side of surgery and recovery, but it won’t be as real as it was that afternoon as I sat, crying into the keyboard as I typed in the dark.
--------------------------- as for me... I suck.... I don't have anything to add... here have some youtube...
Elton John-Tiny Dancer
and that brigs up Kathy Wyatt... I thought I had a connection with her... but for the last several months I got nothen...so if you have seen her... tell her I have been thinking of her.
I am finally getting around to finishing the final "chapter" of my last embolization trip to Denver in November! That was the trip Celia went w/me on and it turned out to be a week hospital stay instead of the usual over night! I've come to learn that 95% of Dr. Yakes patients get sent home the same day as their embolization - but since my avm is facial and extensive, it's best that I'm kept overnight! That week in the hospital took a lot of my time I might have been holiday shopping! To boot, I ended up having to go back into the hospital those 4 days here locally, so there went more time I could have been shopping or enjoying the holiday season! Darn! Oh well. Here is the photo we've all been waiting for! The sister photo! My sister Celia had been trying to "edit" the photo, as she thought it was too dark.
Also, I want to include a photo of my two bears, Saba and Rulon! Saba goes with me to work every day and to all my doctors appt.s! I get so many comments on them both, so they are a nice distraction from my avm! I have fun dressing them differently - they make me happy, so I enjoy having them around!
Oh! I want to send a "shout out" to Dr. Zane, my ENT here locally! He is very supportive of avmers - I had given him Shalon's web site address once and he looked it up and had liked her site! I recently had an appt. to see him and know he was going to try and check my blog out!
Well, I am heading out to my next embolization Jan. 6,7 & 8th - and this time Mark will be coming with me! With any luck, we'll have a few minutes to spend with Shalon and her husband Josh while we are up there!
We hope everyone is having a great holiday season! I will certainly try to blog again sooner this time - as Marks birthday is New Years Eve! Catch up w/all of you soon!
Love,
Mark & Cyndi from... -------------------------------------
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I figured I'ld give you a break on my morbid self. Congratulations!
So what to do? hummmm.....
I know what to do.... I'll give you youtube! just a couple...
My ex-wife would like that....
okay enough... for now oh oh oh! I forgot one... hang on.
How could I forget my Jimi!? Ok now I say good by... but only for a moment... or two.
Thank You, know that by giving me a small donation you have made a happy man.
I have had an AMV, a head bleed, and now have only my left hand to type with. I try. If you think that I try, please give.
