Thursday, November 19, 2015

Gratitude, Tempered

The symbol is a start,
but it's not enough
 My thoughts are with Paris 
... and with Nigeria
... and with Baghdad
... and with Lebanon
... and Israel
... and Camaroon
... and Chad
... and Egypt
... and Somalia
... and all the other areas that have been attacked recently, and continue to be targeted and live in fear.

Now's the time, leading up to Thanksgiving, when we usually think (and write) about all the things that make us feel grateful.  That's a little harder now, when the news - and our social media news feeds - are filled with so much negativity:

Saturday, November 7, 2015

When Bad News is Good News

They say time flies when you’re having fun … well let me tell you, time has been like a turtle crawling through molasses for me.  There’s been a lot of change – with my medications, my symptoms, my diagnoses (see the updated What’s Wrong page), and my medications again.  Honestly, the past couple of weeks have been the worst it’s ever been … but Silver Lining Girl realizes that may have been necessary to figure things out – and (hopefully) make them better.

For the past 4 years, I’ve cycled through a dozen diagnoses, countless tests, and medication changes each step of the way (all this after being dismissed and disregarded by doctors for 4 years before that because there were no “visible” symptoms).  Doctors initially said I had "something autoimmune" (meaning that my immune system is attacking healthy cells in my body, rather than protecting me from infection) affecting my joints, my skin, and my body as a whole (systemic symptoms like debilitating fatigue, fever/chills, etc.), but they couldn't pin down which disease(s) caused my symptoms.  Prednisone has been the only thing to keep the swelling in check, but it’s brought with it a number of side effects: 100lb weight gain, weakened bones and teeth, Cushing Syndrome, gastritis, blurred vision, and more … and still has not been enough to take away the pain.  For these reasons, we’d tried to get off the Prednisone a bunch of times … but each time we tried, my feet and ankles swelled up within just a couple of days, forcing me to go back on the Prednisone.

A few months ago, I decided that I didn’t care about the swelling – it was better than some of the long term problems that Prednisone was giving me.  It wasn’t just vanity – the weight that it caused me to gain was making everything else worse, and was more likely to break my weakened bones.  I guess part of it was vanity: I didn’t want to become a fat, blind, toothless, bearded lady who breaks bones every time she moves.  Either way, I needed to get off the Prednisone, and my doctors agreed.

We spent several months “weaning off” the Prednisone, and – as expected – my feet and ankles started swelling more.  By the time I was completely off it, my feet had gotten so big they couldn’t fit into any of my shoes.  I could barely walk – I started using a cane for the first time (which I had to accessorize with hippie scarves like a Steven Tyler microphone), and had difficulty even with that.  I went back to my rheumatologist (who had never seen me this bad), and she immediately added some new medications to help, including steroid injections in both my ankles (which wouldn’t have the same side effects as the oral Prednisone).  She ordered a bunch of lab tests, and finally got some answers – or at least some direction.  That led to more tests, more specialists, more questions … and ultimately, to more answers.

Thursday, October 1, 2015

30 Things

In case you didn't know, this week (Sept. 28 - Oct. 4) is Invisible Illness Awareness Week.  I'm guessing that if you're not already in the chronic illness community (and I'm hoping you're not, because that would mean you or someone very close to you is chronically ill), then you didn't know.  In fact, if you're not already living with one, chances are you really don't even think about "invisible illnesses" at all.  That's why we need a week like this to begin with.

This year's theme is #MyInvisibleFight.  I was originally planning to write a full piece in that theme, focusing on some aspect of the many battles those of us with invisible illnesses have to fight.  I'm still hoping to get to that by the end of the week, but until then, there's this.  The #IIWK movement has offered as a starting point, this 30 Things prompt.  So without further ado ... 

30 Things You May Not Know About My Invisible Illness 

Friday, August 14, 2015

Let's Do This

I am going to do this.  It’s not going to be easy, but I am going to do this.  I may stumble along the way, but I am going to do this.  I don’t know for sure if I’ll be able to reach my goal, but I am going to do this.  I’m going to start.  I’m going to give it my all.  “My all” may not be much at this point, but it’s something.  Best of all, I’m not going to do this alone.  That makes a huge difference.  That makes this at least seem possible. 

“This” could be any number of things, and that could be said by any number of people.  Running a marathon.  Applying for a job.  Losing Weight.  Writing a novel.  Saving money.  Going (back) to school.  Painting a portrait.  Learning another language.  Mastering the Paso Doble.  Bowling a perfect game.  Anything, really.

For me right now, “this” is the first one on that list.  Well, not exactly running a marathon.  Not exactly running even, but it’s in that family.  It’s the NYC Blacklight Run.  Ok, for me, it’s the NYC Blacklight Walk.  Or Blacklight Limp.  Or Stumble.  Or Crawl.  But it’s the Blacklight SomethingMoreThanSittingOnMyCouch, and I’m looking forward to it.  Ok, I’m looking forward to it with dread.  And anticipation.  And excitement.  And fear.  And pride. 

Friday, March 6, 2015

Maze Runner

Ok, I admit it.  I have not seen The Maze Runner movie or read the book, and don’t even really know what it’s about.  But just by the title, I think it’s about me … and anyone else with an autoimmune or inflammatory disease.

That’s the best analogy I can come up with: having a chronic illness is like being in a maze.  You know going in that it’s not going to be easy.  There is no clear, straightforward path from symptom to diagnosis to cure: it’s a lot of twists and turns, hitting walls and retreating, trying again another way.  There isn’t even a cure, in fact … but there is still a goal: remission. 

Thursday, March 5, 2015


Sooo … what do you write when you haven’t written in 8 months?  I guess the key here is not to try to make up for lost time, or feel like I have to write the perfect post that’s worthy of such a long wait.  It’s not either one.  This one is just filler.  Now, when I write again, it won’t have so much to live up to.  See you soon (I hope)!

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