My life as an entrepreneur, grandmother, writer, dreamer and doer who lives with multiple sclerosis, epilepsy and depression.
Tuesday, January 21, 2014
The Glass is Not Half Empty
...it is a million miles away and I am having a seizure.
Happy 2016!
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MS aside for a moment. I've spent my life as an entrepreneur, adventurer, pioneer, scientist, nurturer and general mischief maker.
--
Somebody asked me quite snarkily over 20 years ago what it was going to be like in 20 years when I'm an old grandma with tattoos and piercings. I have an answer now. It rules.
--
I probably spent yesterday laughing with my grandkids.
--
I love a diverse range of music and it's always cool to find new sounds or get suggestions. If it reminds you of 70s Brian Eno, it's probably something I would enjoy. Industrial Bollywood hip hop? Likely. Indie rock with lots of strings. Yes.
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I'm always looking for some cool funny sciency philosophical book to read. ---//---
My Dx for MS was May 2015 but I've been having significant neurological issues for years. ----
MS - the Special Sitcom episode:
The last thing the nurse said to me after the lumbar puncture was "I hope you don't have MS". I immediately received a post-puncture Coca Cola with bendy straw AND an official MS diagnosis a few weeks later. Jinx. Pretty sure that nurse owes me another Coke.
Sunday, January 19, 2014
Don't Panic
Epilepsy sucks. Being uninsured sucks.
If you applied under the Affordable Care Act last year, you, like me, may still be uninsured even if you qualify for coverage. If you receive a denial letter this month please read it very carefully, each and every word.
I know how stressful being uninsured is. I know how much it sucks. I know that you, like me, do not sleep well; you toss and turn all night wondering if you will run out of medication before becoming insured; you dread not being helped in time; you dread dying in your sleep from SUDEP; you wonder what is really going on in your brain.
Without insurance, your medical care, like mine, is limited to discounted prescriptions provided by nonprofits and/or manufacturers and rare trips to a clinic or nurse practitioner. You do not have specialists. You do not have access to proper diagnostic testing. You do not have care.
You are holding on to life by your fingertips in hopes of surviving.
You do not have the luxury of sitting around and waiting. Life does not stand still and death is less compassionate about your plight than a Physician's Assistant who hasn't slept in three days.
You live with a serious chronic condition which you realize must be controlled.
I want you to read any insurance letters carefully. Even if a letter begins with the dreaded DENIED.
I want you to see the letter I just received.
Panic. Panic! PANIC!!!!
If this were a Choose Your Own Adventure book would you:
a. Rip up letter and throw in trash.
b. Hope SUDEP takes you quickly
c. Notice the parenthetical "Continued on the back of this page."
Don't panic.
THE FUCK?!!
This is NOT an actual denial letter. The state has NOT processed my application in accordance with ACA yet.
Have you received a similar letter? Tell me about it! Send me a Tweet. @seizethediary
Happy 2016!
--
MS aside for a moment. I've spent my life as an entrepreneur, adventurer, pioneer, scientist, nurturer and general mischief maker.
--
Somebody asked me quite snarkily over 20 years ago what it was going to be like in 20 years when I'm an old grandma with tattoos and piercings. I have an answer now. It rules.
--
I probably spent yesterday laughing with my grandkids.
--
I love a diverse range of music and it's always cool to find new sounds or get suggestions. If it reminds you of 70s Brian Eno, it's probably something I would enjoy. Industrial Bollywood hip hop? Likely. Indie rock with lots of strings. Yes.
--
I'm always looking for some cool funny sciency philosophical book to read. ---//---
My Dx for MS was May 2015 but I've been having significant neurological issues for years. ----
MS - the Special Sitcom episode:
The last thing the nurse said to me after the lumbar puncture was "I hope you don't have MS". I immediately received a post-puncture Coca Cola with bendy straw AND an official MS diagnosis a few weeks later. Jinx. Pretty sure that nurse owes me another Coke.
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