Thursday, May 26, 2016

Who Am I Now?

... aren't I?
Soul-crushing.  That’s really the only word I can use to describe this morning.  I had my disability (appeal) hearing today, and it just goes against everything that I am … except that it is what I am now.

I’ve been having a really hard time accepting my disability lately.  Maybe I’m just living in denial, but I like it there - focusing on the positives, the things I can still do, the way that advocacy can be empowering.  These are all good things, and that’s generally where I (almost) always choose to focus my thoughts and my energy.  But it’s been getting harder and harder to do lately.

That’s because Disability has been fighting me, and it feels like it’s winning.  Over the past 6-8 months …

Thursday, May 19, 2016

Are You Aware?

You may be wondering how it is that during Sarcoidosis Awareness Month I posted something (sometimes more than one something) every day about my illness … and yet now that we’re more than halfway through Arthritis Awareness Month (and Fibromyalgia Awareness Month) – the conditions I’ve been living with long before I’d ever even heard of Sarcoidosis, let alone been diagnosed with it – the only thing I’ve written here was a reflection on last month.  Well that’s because I’ve been so busy DOING (and thinking, and planning), that I haven’t had time (or energy) to write about it!

So let’s start with the month overall – Arthritis Awareness Month.  Why do we need it?  After all, it’s not like Sarcoidosis – everyone’s heard of arthritis, right?  Everyone’s aware, right?

Well, yes and no. 

Saturday, May 7, 2016

The Power of Purple

I recently discovered that April 2016 was Sarcoidosis Awareness Month.  Since that is my latest diagnosis, and since no one I know had even heard of the disease before I was diagnosed, I knew that Sarcoidosis Awareness was definitely lacking, and an important place for me to direct my energy.  I discovered a few activities that were right up my alley, including a Sarcoidosis Awareness Walk and a PURPLE challenge!

Purple has always been one of my favorite colors, so I figured it would be fun to add some purple flair for the month.  Rather than just one day of purple, I vowed to show off my purple every day during the month of April.  I took pictures, posted on social media, and tagged and hashtagged away.  It was definitely fun to come up with creative ways to have a different purple item showcased each day.
View my Sarcoidosis Awareness Month album here