Saturday, June 27, 2009

Even darkness must pass

The battle between darkness and hope...summed up perfectly by Samwise Gamgee:

It's all wrong...we shouldn't even be here.
But we are.

It's like in the great stories, Mr. Frodo, the ones that really matter. Full of darkness and danger they were. And sometimes you didn't want to know the end because how could the end be happy? How could the world go back to the way it was when so much bad happens?

But in the end, it's only a passing thing...even darkness must pass.
A new day will come. And when the sun shines it will shine out the clearer.
Those are the stories that stay with you.



But I think, Mr. Frodo, I do understand.
I know now folks in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding onto something...

That there's some good in this world, Mr. Frodo, and it's worth fighting for.

Friday, June 26, 2009

GERD Your Loins

A couple of weeks ago I was trying to avoid doing math homework and instead watched "The Devil Wears Prada" on TV. In the first few minutes of the movie we see the ├╝ber-intense character of Miranda Priestley (Meryl Streep) make her entrance into the Runway office as Stanley Tucci tells the office, "Alright everyone, gird your loins!" The effect is not only comical, but also frightening as everyone prepares for the intimidating editor.

Yes, this movie is totally fun and totally frivolous. But ever since I watched it, I have had that phrase stuck in my head. Not only does it crack me up, but I am finding it more and more pertinent.

Let's be honest. The past three years have been (pretty much) nonstop medical drama in my world. It started when I found a lump in my breast in '06 (later removed and deemed benign). I fainted, fell on my face and knocked out my tooth in '06 (a root canal and crown later, I’m much better). This was shortly followed by my MS diagnosis in '07 (with four nasty relapses to follow). My eyes stopped producing tears and I was told I have "possible Sjogren's syndrome" in '08. And two weeks ago (after many months of chronic hoarseness), I was delivered the news that I have GastroEsophageal Reflux Disease.

I have battled acid reflux on and off for years and always managed it fairly well, but for four to five months now my hoarseness has been getting worse and worse – as are the feelings and pain that go along with bad reflux. It is not an uncommon disease, really. Some people experience it intermittently, others more chronically. The scary thing is that if it goes untreated for too long you can end up with permanent damage to your esophagus and/or vocal cords (not something a singer ever wants to hear).

Last week my GI doctor did an upper endoscopy, where they send a camera into your esophagus/stomach, and confirmed I have really bad reflux. Apparently, I am "too young" to have it as bad as I do. My response is always the same: Aren't I too young to have most of the crap I have? Diseases are not age-discriminating.

As I came out of anesthesia he says, "We need to hit this hard and hit it fast," a.k.a. do everything possible to get this settled down so my esophagus and vocal cords can start healing.
We are trying a new medicine and I have all these diet restrictions, too. I have had no caffeine for two weeks and after the sixth day my caffeine-withdrawal headache finally ended. I cannot have spicy foods, tomatoes or tomato sauces, or garlic or onions. No citrus fruits, no fried foods or super fatty foods, no alcohol, and no chocolate, among other things. Also, I am supposed to eat smaller portions, not letting myself get too full, which can also be a reflux trigger.

Sadly, after two weeks of new meds/new diet, I have had worsening of my hoarseness. I went to the ENT today and he sent another camera down my throat (actually through my nose – Ouch!) to look at my cords. He said they were surprisingly un-swollen and not red at all. This is good. He said that sometimes other stomach enzymes pop up and mess with your cords, even when you aren’t making crazy amounts of acid. He then showed me a screen shot of my cords as I was attempting to sing a lovely E with a camera down my throat, and my right vocal cord was all the way at center attempting to make contact with lefty, but lefty wasn’t cooperating and was lagging behind. He said this was not normal. It could be some tiny cyst or something hiding out on the left cord, or it could be “neurological” (I felt as if I was totally on House, the TV show). It was as if my cords were out of sync with one another and not communicating, and when your cords don’t come together, you certainly would wind up with an unclear vocal sound. (15+ years of private vocal lessons taught me at least that much!)

So now I have to call my neurologist (in case it’s a new MS symptom), call my rheumatologist (because it could also be throat dryness associated with Sjogren’s that is causing all of this), keep my follow-up with the GI Doc (in case it is reflux-related) and look into meeting with a speech therapist (in case none of the above come up with a solution, we’ll start working on ways to get my cords to work together again). In the meantime I am really just hoping it goes away magically on its own, but I’m having a hard time thinking that will ever happen with any of my wacky nutjob symptoms.

More than anything, I really truly hate the feeling of dread that I find myself fighting as I think, "What next?" With three years of medical drama after drama after drama, it is difficult not to see a pattern here...not only in my MS relapses, but in the seemingly never-ending new symptoms accompanied by some new diagnosis.

Should I be starting a betting pool for what will appear in the next 6 months? And can I put in a vote for something like an ingrown toenail or a mild case of hives or something? God, how horribly cynical, yet slightly funny.

I find myself "girding my loins" for what will come next. It is a truly awful feeling, and I don't yet know how to manage it. They say that fear is a great motivator and so I am hoping that my fear of my unpredictable medical future can help motivate me in some sort of positive way.
And seriously. This thing has just got to turn around because I talk too damn much to not have my voice operating at 100%.

(But in the meantime I am supposed to be on “vocal rest” as much as possible right now to give my cords the best chance possible to heal, so know that my phone time is limited at present! And with my email time limited due to all my eye issues, I am quickly running out of ways to communicate! Snail mail? Carrier pigeon?? Smoke signals???)