Friday, October 3, 2008

Is this thing still on?

I like to think of this space as a bear hug — wrapping you in a warm, enormous smile — perhaps me at my most positive self. And since the past 2 months of my life haven't been full of warm fuzzies, I haven't felt like I could or should post. But I'm realizing that all that does it not tell the whole truth, the whole story, so here I am. Battered and bruised and not-so-much in a good place.

view from the waiting room I visit almost weekly

As you know, I've been dealing with a great deal of physical pain from the surgery. Pain that never goes away, pain that wakes you up at 3am, pain that makes you have to sneak off to the bathroom at work to (sorry) vomit. It has no ending in sight, it gets worse at times when you least expect it, it remains in the same location of your face so there is no relief. My doctors can't figure out why I'm still infected, my insurance company won't cover other drug options and I'm allergic to most of them anyways.

Supposedly the infection from the surgery is causing the pain in my sinuses... but the migraines and headaches are being caused by food allergies. It's funny, I never could tell a difference before in the type of pain I was experiencing until this surgery:

* Surgery Pain = dull pain on side of nose and eye, constant.
* Migraine Pain = relentless stabbing, like a heartbeat on side of eye; makes left eyelid swell. Nausea from bright light and sound.
* Sinus Pain = sharp pain under eye and on side of nose, pulsating.

So I started doing some research to make more sense of this, why it was all happening, what it all meant. And just the other day I saw an interview on NBC with the woman who wrote The Migraine Brain, a book that teaches migraineurs how to develop plans to prevent attacks by finding your triggers. Of course I bought it the day it came out and because of it, I haven't had a migraine in 10 days (more on this in a sec). This is a minor miracle.

"I remember being surprised that anyone would marry me because there were so many days each week where I had to lie in bed. I've lost friends over migraines, who think you're making excuses when you say, 'I can't go out with you, I'm sick.' They say, 'How can you be that sick?' They can't believe it's that bad, they think you should just take some Advil and get over it." excerpt from The Migraine Brain

I'm lucky that my friends have been understanding. More than, really. But the feeling of worthlessness — that you're bringing everybody down, that you just don't want to even hear yourself say, "I can't, I'm sick" is always there. Not being able to plan your day, your weekend, a vacation because you don't know how you're going to feel is a constant struggle. Going to bed with excruciating pain and waking up with it the next day is a Ground Hog's Day I wouldn't wish on my worst enemy. I've been forgetting absolutely everything, I can't work to save my career, and I certainly can't find the right words to begin to express my thoughts. I have lost my sense of clarity.

However, I do feel like I'm finding somewhat of an end to the migraines, due to diligently keeping a food/migraine diary (a suggestion from the book). I knew I had some food allergies, but I had always thought they only caused hives. Nope. They are causing my migraines. Strawberries, pineapples and get this — wheat. Yeah, that's been a hard one, it's in so much (good) food. But honestly, I'm at the point that I don't mind giving something - anything - up because I'm getting so very much in return. I'm literally getting my life back.

I'm now working on incorporating yoga, meditation, breathing exercises — anything that will help me refocus the pain. I am hopeful that the pain from surgery will go away at some point, there is just no telling when. I think the best thing is to at least feel like I'm in control of it. And I do want to say that I have gotten a great deal of positive things from the surgery that I need to focus on too: I can breathe deeply, I can sleep soundly (no more insomnia!), and supposedly, I will have less sinus infections. These are all amazing results, and I'm so grateful for that.

Thank you all for being so very patient with me through all of this. I've truly missed Flibberty, but I haven't known how to say all of this until now. Maybe now I can because I finally have hope that there will be more good days than bad. And I can't stress enough how much the book has helped me — not only as a resource, but just knowing others out there are going through this is comforting.

I'm hoping to get back to regular posting in the next few weeks. I know everybody has their "stuff" too... and I so appreciate you checking in on me and telling me that you've missed catching up with me here. It means more than you know.


L.C.T. said...

Woo! Welcome back.

L.C.T. said...

Woo! Welcome back!

Alison said...

You are so strong! I'm always thinking of you. And way to go on the yoga- it does wonders, doesn't it? Looking forward to more Flibberty!

Daisy said...

I'm so sorry to hear you're having such a hard time. I really feel for you- I have ME which is a completely different story, and doesn't involve great pain, but means I have to sleep all the time and have to make excuses to my friends about my need to go to bed at 6pm some nights... anyway, I've been away for a while too (I used to be Marianne) but I'm back now with a new name and hope to keep in touch!

Anonymous said...

I have missed you so much Ali Boo!

I love you!