Monthly Archives: May 2017

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Recipes from Rainbow Sky

I got the Rainbow Sky newsletter today ( You can find Vicki’s site here ).  After I hurried up and hunted the answers to her contest questions (there are several of the prizes this month I really would be tickled to … Continue reading

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One (or two… or maybe three) In A Million (or so)

Ever been told that you are one in a million?  I’ve heard that being suggested as a compliment but sometimes it’s not so much… If you have RA, being told that you are one in a million (or more precisely … Continue reading

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Somebody’s Hero

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In the end it all comes down to being who you are and doing what you do.  Just being who you are and holding out your hand (physically or virtually) to help someone down the frightening path ahead of them … Continue reading

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Women In Technology… One Bright Side

So I have this wicked cool soapbox.  I am non-traditional.  Period.  I am a woman in a nontraditional role.  I am a Woman in Technology. Being a woman in IT, there are a lot of challenges that I know I … Continue reading

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Contemplating Success

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It has been quite an eventful week, this week. In the past week I have been given the preliminary (still waiting on the ACTUAL) contract for the book “The Tech Professional’s Guide to Communication in a Global Workplace”.  So, I’m … Continue reading

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Bright (technically dark) and early…

Today is “D” day for squirrel.  Today she takes her state boards for barbering.  I’m up obscenely early even for me… creatures are fed… the next pot of coffee is on (if anyone can lay their hands on Aspen Ridge … Continue reading

Pre-existing Conditions

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No, mom, the picture isn’t from now, it’s from a couple years ago… just making a statement.

Okay… let me start out by saying I’m trying really hard not to over react. I’m trying hard to think that, even in politics, there has to be some logic involved, some degree of common sense.  I’m trying to believe that a country that has progressed so far in the past dozen or so years can’t possibly slide backwards so far so fast.  I try.  I really try. I want to believe that my daughter (who has kidney stones and epilepsy) won’t be cast adrift.  I want to believe that my son with sjogrens will likewise not be put on his own iceberg.

That said… trying hard doesn’t keep me from being terrified.  I’m terrified.

I read pre-existing conditions.

I read caps on coverage.

I read the rhetoric and the realities.

If there is a million dollar cap on lifetime benefits… and I ONLY get my orencia infusions… those magic biologic treatments that keep me functional… at 10,000 billed to my insurance a month… that leaves me with just over 8 years.  8 years of being able to be a functioning tax paying contributing to society citizen.

There has to be an irony in the fact that 8 years will take me to the maximum possible term that Trump could see.

And I am one of the “lucky” ones.

I hear the people in the infusion center talk about what EACH of their treatment actually “costs” if it isn’t covered.    Fifty thousand dollars a week for one treatment.   They get to live almost 6 months (because their treatments are keeping them ALIVE not just keeping the hot glass shard feeling out of their fingers or their fingers pointing in the same directions, or their knees from being the size of volleyballs).

I’m trying to not be reactionary

Acne is a pre-existing condition

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People who had cancer 15 years ago and are not clean and clear… they have a pre-existing condition.

And don’t even get me thinking about how much the fact that a woman is born with the wrong anatomy to matter.  <<it’s been a LONG exhausting week and I might just tell you>>

 

I don’t want to be reactionary… but…

States could apply for waivers that would allow insurance companies in their states to do three things: 1. Charge older people more than five times what they charge young people for the same policy; 2. Eliminate required coverage, called essential health benefits, including maternity care, mental health and prescription drugs, that were required under the Affordable Care Act; and 3. Charge more for or deny coverage to people who have pre-existing health conditions, such as cancer, diabetes or arthritis.

The waivers could also impact people with employer-based insurance, because insurers could offer policies that have annual and lifetime benefit limits, which are banned under the Affordable Care Act, and some companies may choose those policies for their workers to lower premiums.

Let’s face it… I’m really scared.

I’ve written my senators.

I’ve considered stopping my infusions because they will cost more than I make

I’ve considered moving to somewhere that will allow me to afford to exist.

Yeah… not being terrified and not being reactionary isn’t really working for me so much right now.

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For me, It’s all about the spoons

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So, ever since it really clicked with me about spoons and needing to conserve spoons (see The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com) because if I don’t, I really really feel crappy, sometimes for days, I have been accumulating spoons. … Continue reading