What an honor!

November 26, 2012

I’m thrilled and honored to say that I’ve been nominated for the Unsung Hero award!  Thank you so much to all of my readers, and to whoever anonymously nominated me!

Ideally, this is where I’d post an image for you to click on so that you can endorse me.  Unfortunately, as you can see, for some reason WordPress won’t accept the html.  Go figure.  But luckily I can link to the image, so just click here to see it (and to endorse me if you so choose, but that’s really not necessary.)

But for any who are interested, you can see more information about the various awards here.  And please consider nominating someone from our community.  It is a great way to recognize the incredible work that so many are doing.  I have nominated others, and I hope that you will to.

Again, thank you for reading!


Getting bullied by bureaucracy

November 25, 2012

I was never one of the cool kids in school.  That didn’t bother me at the time, and it doesn’t bother me now.  It’s just a fact.  I had friends, and they weren’t considered “cool” either.  I studied and mostly got good grades.  I wasn’t athletic.  I didn’t participate in any of the “cool” clubs.  I didn’t act, and even worse, I did stage crew.  Yeah, I was one of those kids.

On the other hand, I was never bullied or subjected to peer pressure.  I didn’t drink, and no one ever tried to get me to drink.  I didn’t smoke or do drugs, and no one ever offered them to me.  I wasn’t teased or harassed.  Well, there was the boy who used to tease me and chase me around the playground when we were 8, but in hindsight I realize he probably did that because he liked me.  And anyway, he stopped doing it after I kicked him in the groin one day.  Someone tried to cheat off my work once, but there was no pressure.  I just noticed him looking at my paper during a test, and I guess I could have hidden the paper from him.  I hated that class and did really badly in it, so I didn’t bother to hide paper, and was sort of gratified when I got a C.  I never did find out his grade, but I gather it wasn’t so good.

I got through my entire life (so far) without being bullied in any of the standard ways, but now I realize that I’m being bullied after all!  I’m being bullied by the insurance companies.  This may not be the person-to-person bullying that others have experienced, but it still feels personal.  My life is horribly disrupted.  I think about it far more than I’d like to.  I may lose my home.  I have to be public about certain parts of my life that I’d rather keep private.  I’m being told they don’t believe me (essentially) and that they won’t give me what was promised to me.  I’ve spent hours brooding over the situation, trying to come up with nonexistent solutions.  I have enlisted the help of someone else, but still the bullying continues.  Standing up for myself only seems to prolong the misery.

I’VE HAD ENOUGH!

There’s no perfect answer.  All I know is that I am sick (no pun intended) and tired (again, no pun intended) of being treated this way.  I want to get the benefits that I deserve!

My appeal was filed a week and a half ago.  By law the insurance company must respond (even if it’s only to ask for more time) within 45 days.  That puts it right at New Year’s Eve.  I don’t know what the new year will bring.  I hope, I desperately hope, I achingly hope that it does not bring more fighting.  But if I have to fight for my rights, then that’s what I’ll do.  Let’s hope it doesn’t come to that.


Why too much strength can be bad

November 20, 2012

When I had to leave my job last year, I expected everyone to be supportive.  The responses shocked me.

Yes, my close friends and family were very supportive.  Really, except for my sister (but there are other issues there), I couldn’t have asked for more.  It was amazing.  The shocking part was the number of people who seemed surprised when I left my job.  Many asked why I was leaving; it had never occurred to them that it could have been because of my health.

Over the years I’ve put on a brave face.  I do this partly because I don’t like to dwell on all the health crap.  I like to focus on the better parts of my life.  I do this partly so people don’t get annoyed that I complain too much.  I also do this partly because I feel like if I let my guard down and give in a little, that I’ll end up giving in a whole lot, and I won’t be able to keep things in control anymore.

I thought of that just now when I saw this on Facebook.  It’s so true.  I work hard to “keep it together,” to not dwell on the shit I deal with daily, and to appear ok.  And that means that most people have no idea what I deal with, even in the smallest way.  I’m not looking for every person I know to check in on me constantly, but I suppose I need to let them know at least a little bit about what’s happening.  After all, how can I expect to raise awareness when even the people in my life don’t realize how sick I am?  And on a much simpler note, I need to let people know so that they’ll understand that sometimes, I really just need a hug. Being strong is good, but some days, a hug makes all the difference.


That…you know…*feeling*

November 17, 2012

I was tired, but it was more than tired.  It was exhaustion.  It was like someone sucked my energy out of my body with a vacuum.

My muscles were tired, but that’s not really the word.  They were worn out.  They were heavy.  It was an effort to pick up my phone.  It was tiring to type or pull up the blanket or roll over.

Something hurt.  I don’t know what hurt, or where specifically, or what kind of hurt.  I just knew that something hurt.

I was hungry, but I was too tired to get out of bed for food, so I just lay there.  I tried to get up, but I couldn’t manage to exert that much effort.

And while I lay there, I thought about how to describe what I was feeling.  My doctors would ask.  A good description might help with a new treatment.  The problem was, I just didn’t have the words.  I couldn’t pinpoint the feelings.  If the vocabulary existed, I didn’t have it.

This wasn’t the first time I lacked the words to describe how my body felt, and I know it won’t have been the last.  I just hope that somehow I can find a way to convey it all to the doctors one day.  And to the nay-sayers.