So, you have an idea for a start up?

Over the past year, I've met with a wide range of entrepreneurs in my geographic area who have great ideas for start ups...but...and there's always a caveat in the way, where do they start? Half of these folk-with-the great-ideas talk to me about Kickstarter as a means to (kickstarting) their dreams into reality and then they wait for my response. I wish that the ideas themselves were enough to turn dreams into realities but that's not true and Kickstarter isn't a magical planet where you put in a picture of your best idea and out comes a check for 10 grand. A lot of hours of planning, thinking, rethinking, researching, talking, losing some sleep and making mistakes are a part of the pre-Kickstarter leg work that must be done. To back up my theory, I'd like to refer to the experience of writers Sean Platt and Johnny Truant, smart, driven creators of Write.Publish.Repeat. Their idea for a live and exposed process of writing a novel was the idea they wanted to make happen - but only if they raised the funds. Fiction Unboxed was fully funded but not without creating a laundry list of 'what not to do' that was learned only from having made it through the experience.  Platt and Truant sought to expose the tedious (dark and sinister? but fun!) world of writing a novel and make it public but their lessons about the process are crucial tidbits of advice when considering your own start up idea and whether its ready for public consumption - or for Kickstarter.

Fundraising 101.

Things are changing around here so look for more words on fundraising and I'll keep you posted on the best blogs to check out if you're looking for info for a non-profit start up.

Stay tuned!

Dealing

December 10th, 2013
What does it feel like to live with a child who has seizures? When our son’s seizures are under control by his meds, there are moments where I can actually forget and can be a “normal” family that worries about “normal” things like when should we move the baby crib out in exchange for a big boy bed or when to start Kindergarten or soccer lessons…or visit Disney? Sometimes, it even feels like I’ve escaped something horrible, unspeakable and that I outsmarted the beast that haunted our lives and I remember that I loved writing and allow myself to create fiction again because reality isn’t drowning me in fear.

Then our son gives me that look and I know what is coming as he walks toward me for a snuggle while the seizure is taking over the moment. Which moment? Maybe that great family moment when everyone is bundled up with scarves and hats and gloves and we find the perfect Christmas tree and help saw it down and say words like, “yay” and “I love that one.” And then.

And then. (And I know those of you who know, know the “then”)  I’m sitting in a snow bank holding our boy and starting to count and note seconds and try to get a glimpse of his face through all that winter gear I forced on him to stay warm that’s now in my god damn way from seeing his face and whether his face is twitching and dropping expressions. And I have to do this now. This job of mine, which went from searching for the perfect Christmas tree in the Deschuttes National Forest and taking in the way the water is frozen along Tumalo Creek in parts and the peace of it all to this moment right now. The one with our son in my arms having another seizure he does not deserve. I force myself to look up to the tree tops and promise I won’t let this be the memory of today. I make a mental promise to our sons (even the one without the seizure disorder) that today is still extraordinary.

DENIED

Appeal Request to:
Regence BlueCross BlueShield of Oregon
Level 2/3 Member Appeals, Mail Stop E9A
PO Box 5726
Portland, OR 97228

Member Name: Cullen Doherty
Group No: 10000509
Member No: 921404329
Reference No: 001024538
Request for: Genetics Diagnostics Testing for 81405, 81406, 81407


Level 3 Member Appeal Board -
I am writing in regards to Regence failing to agree to cover the genetics testing for our son, Cullen, who was diagnosed with a seizure disorder at the age of six months. The neurology team at OHSU and now here in Bend are unable to continue to provide accurate information about Cullen’s health because it is still undetermined whether he is suffering from a rare genetic disorder called Tuberous Sclerosis. Should it be confirmed that he does have TS, Cullen will need to not only have MRI’s every year to check his brain but also ultrasounds and CT Scans to check his heart, kidneys and eyes, as this disease causes benign tumors to grow in major organs. These tests will continue to cost Blue Cross Blue Shield a significant amount of money on a yearly basis. If the genetics test is completed and results come back negative, Dr. Bell, here in Bend, can focus on the brain only and no longer send Cully off for 3-5 tests per year chasing the unknown; thus eliminating the majority of the yearly tests. More tests equal more money spent on healthcare costs. I am positive this is not one of the goals of a medical insurance company. One way for you to do this now is by making the right decision and the appropriate decision by approving of the pre-authorization for the three genetics tests (81405, 81406 and 81407).  According to Athena Diagnostics (the only genetics test site that does TS tests), the cost of the three genetics tests is $5,999.00.

Here is what you wrote in your last letter dated May 21, 2013:
According to the governing Regence Medical Policy, genetic testing for indications other than determining risk or establishing a diagnosis for a genetically inherited disease may be considered medically necessary when all of the following criteria are met:
1.Diagnostic results from physical examination and conventional testing are inconclusive, and
2. The Clinical records document how results of genetic testing are necessary to guide treatment decisions, and
3. There is reliable evidence in the peer-reviewed scientific literature that health outcomes are improved as a result of treatment decisions based on molecular genetic test results.

Our case meets ALL the above criteria. In order to continue to KNOW anything about Cullen’s unique situation, we MUST go through with genetics testing because the medical community fails to have any further answers at this point. MRIs can help see inside the brain, but the genetics test results provide Dr. Bell and Dr. Colin Roberts (OHSU) with the insight necessary to treat the disorder in order to improve Cullen’s health, as well as make informed treatment decisions.

Thank you for your time.
Sincerely,

Conan and Amy Doherty

Bend, Volcanic Theatre Pub...and Happy Birthday wishes

The C-bear's birthday is one week away and he will turn three. It has been a stellar year of living in Bend, Oregon, and enjoying this amazing community of inspiring and creative people. But C has had quite a lot of seizure breakthroughs and we've been upping his meds to catch up with his growth spurt. For that, it was also challenging and full of some fear and panic attacks. This pic is from a family sports day where we were competing against other families and bonded in the meantime. But it's also a happy picture and an important one on a lot of levels.

Another lesson I obtained this year was about enjoying the moment I'm in instead of waiting for the moment to be "right." I feel like I owe it to myself and to the family to make these connections so that we can learn to take what we can  - now. 

I've made some great friends in Bend who are interesting and inspiring, too, one of these peeps is the owner of the Volcanic Theatre Pub. Derek is an amazing actor and visionary so if you get a chance to see him in a play - go for it. But he's also been supportive of me starting up a NW Epilepsy support group for those families, like us, who are in Central Oregon dealing with children with seizures and therefore living with lots of unknowns and unanswered questions. We are hosting our monthly meetings at the Pub, because we can't do this alone. Kind of like Derek and one of his plays - he directs, and acts in his play - but he also needs people. People who are like-minded and passionate and who want to give of themselves and their time to create something amazing and real. And I need people, like my dear Indy friends and Portland buddies and Bend friends, too, to keep me afloat and to make this scene work.

So thanks for a great year, friends - old and new. And happy birthday to my wee almost three year old who, this week, has been seizure free! 

Other Peoples' Stuff That Hits Close to Home...

MY SEIZURE DOG was written by the then seven year old Evan Moss, who wanted to help raise money for his own seizure dog, Mindy. This story will probably make you shed a tear but I think there is such an important message about the human connection with animals as well as the need for more research and understanding of seizure disorders.
Though the story's focus is, of course, the boy who gets the dog, during the video, my attention was on the mother. What's it like in her head? What thoughts has she had and what do you do with the ebb and flow of good news to bad to best news out of the worst situation? What words has she let fall from her vocabulary and at the end of the day, is there really no end to the fear we have about our children suffering?
In the past year, I've wondered if I need to find a group of parents who are watching their children have seizures and take medication and take different medication and wonder what we would have to say to one another. I've moved to a smaller town in Oregon and don't have the resources that a big city provides. Although, I was somewhat spoiled in a city like Portland where everyone from Hacky Sackers to nail biters has gotten together and formed a group. But I digress. Maybe the best part of Evan's story is that it's happy for the moment. As children, we are taught to look for happy endings but adult life shows us that it's more about happiness out of a moment. Seeking beauty within some drab reality of a given moment takes some work, though. I guess I just need to keep doing that work.
And maybe I'm a little jealous that Evan got published at 7 and I can't seem to even do it at 42.

An Ode to Kombucha

 These thoughts expressed here aren’t from blind taste tests or stolen words from some dude’s blog in Minnesota. These are raw. Never seen before. Just like the crap that floats on top of my glass of Kombucha. Why did I agree to go on a juice cleanse, anyway? What human, who is not the son of Christ, would choose to limit their daily intake of solid foods in the name of health. It’s not a question. It’s not even rhetorical at this point. Seriously, what convinced me to torture myself into healthier bowel movements except that I was convinced that I could do…better?

But what I should say is THANK YOU, citizens of the United States, for buying into the Kombucha frenzy and selling floatable yeast in a drink that resembles flat Fanta. It’s all about probiotics these days. Listen to Jamie Lee Curtis, yo. She knows. She’s half man/half woman so she would be a viable spokesperson for yogurt. Naturally. Here in Central Oregon, I’ve seen refill depots for Kombucha popping up in stranger places than every grocery and coffee shop in town. The car wash? Yes.

And here is where my true fear of Kombucha consumption arises. Let’s say I get a refill and buy my carwash and drive in, place my front left tire in the appropriate slot and jam the car into neutral. And then it’s me and my live cultures getting locked inside the wash box and something goes wrong and I throw the stuff all over my new lululemon yoga pants and there’s no way of getting the protein blob out of my $78 stretchy pants. Then, in the midst of this travesty I realize I can’t at all afford lululemon or Kombucha on the salary of an English major. Damn you, Keats! I fell in love with your educated language my freshman year of college and here you are, still in my head, haunting the pages of my 2013, barely educated prose (if you’ll allow me to call it that).

What am I? I am a sensitive human looking for love and suffering through digestive issues and stagnant small intestinal processes. Still alive, long after your short life span where you at least took long hikes in the Lake District fantasizing about Fanny Brawne. When I really think about it, I bet you would not have touched this stuff.