“Vision is the art of seeing what is invisible to others.” ~ Jonathan Swift

Sunday, May 31, 2009

More than Fine in 2009

I think I am on the verge of something BIG: my eyesight is slowly improving.

I am sure of it now.  I just closed my good eye and tried to read a chunk  of the newspaper.  

"G.M. essentially came under government control when it received its first federal loans from the Bush administration in late December..."  

I read that!  I could READ that. With only my bad eye!  No help from the other good eye!  It was amazing.  I want to read everything now.  But I won't because my right eye is now really tired after trying to read a measly paragraph. It's taking too long to read anything longer with just a gimpy eye.  Letters and lines are still swirly and wave-like, and it takes a minute for my brain to reorder them into the right sequence.  

You may think that this is a small accomplishment.  No, this is a BIG deal.   A couple months ago, I would have seen a dark circle in my central vision, resembling a solar eclipse of sorts.  But today, I can see colors and shapes and some letters.  Maybe they are all jumbly and a bit shadowed, but this is so much more than I had.  And though I am ecstatic, I must accept the sobering reality that there is indeed permanent damage to my retina.  I may regain some eyesight, but I will always have impaired vision because of retinal scarring.  

But let's not forget this wonderful moment.  I want to celebrate and throw a big party full of healthy food and things I can try to read.  Ok, not really.  But I am pretty excited.

In honor of today's great news, I would like to take moment to thank all the important folks who have helped my eyesight get to where it is today.

1) Thanks, crazy-healthy-strict-diet.  You make me eat inordinate amounts of tofu, brown rice, salmon, leafy green vegetables, green tea, and nasty vegan protein shakes.  I am actually getting sick of you, diet, and sometimes I really resent you. But you help me see (more of) the world.  So, I appreciate you, and I will continue this strange journey til death do us part.  Nevermind that I am constantly craving potato chips, french fries, soda, coffee, ice cream, candy, cake, chicken wings, burgers...

2) I'd also like to thank my health insurance plan.  You are awesome, health insurance.  You pay for my super expensive fish oil capsules and my ridiculous eye appointments which cost anywhere from $700-$6,000 a visit. My scary Avastin injections aren't so scary now that they only cost $15.  I can't wait to thank you after next year, when I get tenure and even better health insurance coverage.  

3) Thanks, doctors at Wills Eye. You guys have been taking care of me since 2004 and doing all sorts of things to make me feel better.  From steroids to cold and hot lasers and Avastin injections, you just want me to feel better.  And when those don't work, you tell me that I'm the sharpest MFC patient they've had and that my eye patch doesn't hamper my fashion at all (true story).  I like that.  I can't wait to see you again on June 22 and master that stupid eye chart.

4) Friends and family, you get thanks today too!  You all have been great and let me eat really healthy.  You go out of your way to cook vegetarian or fish for me, or research restaurants that have anti-inflammatory things to eat.   You ask me about the diet and don't make me feel bad about eating healthy.  And when I fall off the wagon, it's usually because it was my bad idea to begin with.  Ahem, except for one of you who trekked through NYC to fetch us some cigarettes...that was a bad idea, esp. because I don't remember how many I smoked and because I kind of liked it. This maybe worse than the bajillion drinks I had this weekend.   Did I mention I also ate chicken? And beef.  Crap.

Regardless, I am thrilled.  Finally, good things are happening in 2009.  Yesterday, a college friend asked me "On a scale of 1 to 10, how happy are you?"  Without hesitation, I said "I am a nine".  Another college friend told me she thought I looked "so healthy" and "radiantly serene".  

Well, if your eyesight was slowly returning, wouldn't you be all this, too?

Wednesday, May 27, 2009

Hello Out There

One of the main reasons I created this blog was to keep some friends and family more easily in the know.  It's a lot simpler for me to just update the blog than rehash the same conversation and facts with each person.  Also, sometimes it is difficult and/or awkward bringing this stuff up.  

However, I chose to keep the blog public and readily accessible.  The paranoid teacher inside me still worries about this.  But I do a pretty good job of keeping my disability a secret at work; today a student even told me she thought I was too healthy to need health insurance...riiiiight.  Though I do struggle over the blog's privacy settings, I am intrigued to find that there are some new readers to my blog.  Who are you?  How did you find my blog?  Do you have multi focal choroiditis too?  Do you know someone who does?  Why are you following my weird blog that often has no focus? I would really like to hear from you, so please comment.

In other news, I am beginning to think that my diet might actually be working.  On the airplane this past weekend, I nearly shocked myself when I realized that I could see--and see well!  The flashes of light were significantly calmer; I even closed my good eye and discovered that I could see much more through my left eye.  This news kept me happy for the rest of the flight.   Then, I spent the rest of the weekend eating processed flour, chocolate cake, and drinking lots of alcohol.  The joke was that I'd return to Philadelphia blind.  And what do you know?  My flashes of light are indeed a bit more intense than before the trip.  Back to being good...but a trip to New York City awaits me this weekend.  Being good in New York City?  Oxymoron!

Wednesday, May 20, 2009

And that makes three

It's been an eventful year for ol' Rightie here.  A post-operation follow-up appointment last week ended in...you guessed it, another Avastin injection.  This makes the third injection in 2009, and I haven't even made it to the midpoint.  

Am I upset? Actually, not really.  I was pumped for last week's appointment and convinced that there would be better news.  In a sense, there was; I was able to read more of the eye chart than previously.  Doctor wanted to give me another injection because he's confident that I can regain more and more eyesight with increased injections.  At first, I was confused because I used to associate these terrible injections with bad news.  Turns out, I have had very little exposure to these treatments compared to the typical MFC patient.  Some folks have as many as 22 injections in one year!  Holy cow!  Though neither of us anticipate 22 treatments, we both understand that I will probably have more injections as the months go by.  

Indeed, I honestly feel like I am gaining more and more eyesight as the days go by.  I have another appointment in June, so I'm quite hopeful.  My doctor has also tweaked terminology with the billing department, and I am no longer required to pay for a single lick of these injections!  

Thursday, May 7, 2009

The Way I Live Now

I stumbled across a fascinating and enlightening article in the New York Times today. Eating for Eye Health confirms what I hoped my anti-inflammatory diet would do for me all along.  Though the article dealt with age-related macular degeneration, its findings are noteworthy and meaningful for those of us with macular degeneration. Period.   The article does not mention it by name, but all its food recommendations are perfectly in line with the anti-inflammatory way of eating.

Thank goodness.

When I began my anti-inflammatory diet, I honestly just sort of took a stab in the dark.  Anti-inflammatory diets are not concerned with ocular inflammation. Most folks think of inflammation of the joints...or some other tangible chronic pain.  My inflammation is a silent and painless one---when my right eye is duking out all sorts of neovascular and hemorrhaging activity, I honestly don't feel a thing.  At best/worst, I might get a headache because the flashes of light become overwhelming.  I embarked upon this diet out of hopelessness more than anything else.  Whether the diet could help ocular inflammation was a big unknown.

And then the article!  It's a small ray of hope for me.  Surely, some part of all this must help.

Today, my CSA with Lancaster Farm Fresh began.  My box was on the smaller side (typical for the early season) and filled with the makings of salad (lettuce, arugula, cress, radishes, mushrooms, scallions, and rhubarb).  I picked up some other goodies at the market, along with some fish because I was motivated by the article; my plan is to make some salad with seared salmon.  For dinner tonight I had leftover risotto with carrots and leeks.  I added a simple salad of lettuce, grape tomatoes, mushrooms, balsamic vinegar, and a sprinkle of flax seeds.  It was a very springtime dinner, which was a nice diversion from all the rain we've been experiencing lately.

...as for the rhubarb.  I'm going to try my hand at a rhubarb crisp, of which I will have one bite.  Friends will hopefully finish the rest.   Perhaps I'll see if I can track down a healthy rhubarb dessert recipe.