Tuesday, November 3, 2009

My Soapbox

When I started this blog, it was never my intention to use it as a platform to discuss my thoughts on politics. I wanted it to be just a place for me to get some things outta my head by writing it down as I have always been one to journal and find that writing is a great form of self expression. While I am always happy to have political discussions in my normal, everyday life, I wanted my blog to be free from all of angst, stress and general complication that thinking about politics tends to bring me.

However, with that said, there is something I would like to say - partly to just share an opinion and partly to help myself feel better by writing it out because, well, that is just what I do. This has to do with America's favorite topic right now: health care.

The health care debate is as strong as ever, and in the usual fashion of ANY issue brought up on a national scale, it has become as polarized as can be. Unfortunately, we tend to lose sight of the real heart of many of these issues as we all get got caught up in who is wrong and who is right and who has the best interest of America in mind and who is conservative and who is liberal and who just wants to spend and who just wants to save and yada yada yada. You know what I just want to say??? ENOUGH!!!!!!!! Enough with all of the political baggage that gets inevitably attached to EVERY SINGLE ISSUE. Enough with all of the name calling and the petty news channel bickering. Enough with the republicans vs the democrats. ENOUGH! It is getting us NOWHERE people. It really isn't. All it gets us is less focused on the real crises at hand as we lose touch with basic humanity.

Alright...whew...maybe I should explain why I am feeling so fired up about this. Let me explain:

As I wrote about back in June, about three years ago I was diagnosed with a neurological condition called Spasmodic Dysphonia. Funky words - I know. Basically what this means is that the little nerve endings that control the movements of my vocal cords decided to start misfiring signals as they please, the little devils.

Nerve endings can be so selfish sometimes.

What this means for me is that I have a difficult time producing a normal sounding voice, especially when I say vowel sounds, because my vocal cords will spasm whenever they feel like it. While not life threatening or painful, it has affected my life greatly as suddenly basic things like talking on the phone or talking in a loud restaurant have become increasingly difficult. It is a very rare condition and little is known about it so the idea is to learn to cope and get used to explaining why sometimes, I sound a bit strange. BUT - luckily for me, there is a treatment that is highly effective and has given me hope and that treatment is Botox.

Oh yes...Botox...I love you so
I love you so much, you don't even know
Please don't ever leave me, I need you forever
I see us having a loving, lifelong marriage together

That is a little poem I wrote for my friend Botox. You like?

In the same way that Botox calms wrinkles in people's foreheads, when injected into my freakazoid vocal cords every 4 months, it calms them down just enough so that I can once again sound like a normal person. Most people don't even notice that I have anything wrong and I can go about my business like a normal person. But, once it starts to wear off, the symptoms come back in full swing and I need another shot ASAP to be able to simply talk normally.

Okay - back to health care. Due to some circumstances out of my control, I have had 3 different health care providers in the last year. Luckily, I have been covered the entire time and I know many are not that lucky, but it has not been without major frustration.

Welcome to my life with a pre-existing condition.

Ah yes...the bloody pre-existing condition...it's a real bitch, let me tell you. Health Insurance companies loooooooove a pre-existing condition. In fact, they ALL want you to have one. Why? Because they can a) choose not to cover you or your needed treatment and/or b) charge you higher premiums. I have fought both of these battles in the last year - about 15 times, no joke.

EVERY time I have had to get a new injection, the health care companies have had to decide if they want to cover the procedure again. I had to pay MUCH higher premiums last year after I was laid off and had to get on my own plan just because of my pre-existing condition. But, that was even after being rejected by 6 (!!!) health insurance companies who would not even cover me at all because of my condition. I am 27. I did nothing to cause my spasmodic dysphonia. I will need treatment for the rest of my life. Please, please tell me how this is allowed to happen.

I am currently fighting this battle AGAIN as I type this. My health insurance company has once again denied my treatment and I was told, politely, that I am free to cover the costs myself. Cost of treatment: $2,000. Oh wow - I can cover that myself? THANKS A BUNCH!!!!! Let me first just put down my middle finger and I will go find my check book.

The benefits lady at my work is now helping me fight the insurance company and we will probably win because we have every other time, but the thing is, in 4 months, I will have to go through all of this again. And again. And again. A pre-existing condition is the scarlet letter of the health care world and something needs to give. I don't even have an extremely serious condition. My problem is more of an annoyance than anything - imagine if it were a life threatening condition??!!?

Here's the thing: disease and other health problems are an equal opportunity offender. They can pop up in the young and the old. They don't care if you are black, white, republican, democrat, libertarian, religious, not religious, etc, etc. We are all susceptible to them. And, as soon as you get diagnosed with something that will stick with you for a bit - BAM - slap on that pre-existing condition label and never take it off, because your entire health insurance existence will hang on those words. It really will - I promise you.

Now, I do not have an answer to what is exactly the right thing to do to reform the health care system, but I do know that it needs to be reformed. The political landscape creates a platform where all humanity is taken out of the equation. It becomes a numbers game, and while I KNOW that the numbers are VASTLY important, so is how we treat people. I never thought about being denied coverage until I was faced with it and I am only one of millions in this situation - and I have health care to begin with. Lord knows what happens to those who don't. While I don't know what will ultimately happen, I do know that something needs to change. We need to remember that we are all people just trying to live our lives the best way that we know how and that, at the end of the day, we are all a lot more similar than we may realize - despite the political world wanting us to think otherwise.

Okay - whew...I know that was looooooong and I'm sorry, but I had to get that off my chest. I feel much better now - at your expense - HA! I promise I will not talk politics again for a long while. Thanks for reading and I hope you all have a great day and may you all stay healthy!!!


  1. I know what you mean, my friend who had cancer always had to fight such a battle with her insurance carriers to get alot of her treatment covered. It wasn't enough that she was fighting for her life, but then she had to fight the insurance company to get the meds to help her in her fight for life. It ruined her financially and emotionally. She did lose her battle just a few months ago - but the last 2 years were hell for her because of insurance issues too....

    Having said that...have you tried writing to the company that makes the Botox - I know alot of drug companies have programs that provide the needed drug in certain situations, it might be worth a try.

    Thanks for writing this today - I whole heartedly agree with you! xxoo

  2. Okay the fact that you have to deal with insurance companies for anything is just rotten girl! But what a crazy diagnosis. I had never heard of Spasmodic Dysphonia. It doesn't sound like a lot of fun either!

    And good for you for getting on your soap box and telling the world what's what. It's good for the soul. :)

  3. I applaud you. You are dealing with a very challenging circumstance with such positivity. The bullies need to stop beating each other up on the playground and work together!

  4. I read this yesterday but had to head out the door, and it gave me time to think. Your lovely. Thats what I thought. And so is Dan, yes my thoughts were indeed extensive. It wasnt too political, this health care deal is insane and honestly I know you deserve better, your attitude is much better than mine would be, and for what its worth I am so glad that you arent in any physical pain, but its still a pain! If I could help I certainly would. Please keep us updated...I love your soapbox post don't be afraid to say whats on your mind, we all adore you.

  5. Jocie your voice is not as noticeable as you think. You make it sound like people easily notice it! They don't. Cool post. Yes, Insurance companies need to be regulated.

  6. Jocie - That's just awful. The amount of loopholes and red tape involved with insurance is ridiculous. I can completely understand your frustration. Great post btw. It really helps to put the whole thing in perspective.

  7. I like it when you get on your soapbox. This is a really well written post.

    The Dutch government prohibits cherry-picking. Insurers cannot turn away applicants, or charge them more, because of pre-existing medical conditions or risk of illness.

    I hope it all works out for you.


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