2010, You Win Again!

I am getting a little suspicious.

Something fishy seems to be happening.

My eye appointments are getting progressively...hopeful.

So I have to ask.

Universe, what's up?

As previously posted, my February appointment was positive. I was surprised--especially given the extraordinary stress and junk food consumption leading up to that last appointment. Doc told me to come back in two months. Like a toddler who has gotten away with some naughty behavior, I spent the interim period eating some more junk (including beef on occasion and lots of chocolate) and worse, actively creating junk for more consumption (in the form of baked goods...mmm chocolate chewies, buttermilk pancakes, lemon cake).

Who was I?! Let's just say, I ate some CRAP. If anything, the last appointment gave me permission to eat and drink lots of inflammatory things. And yes, if you must know, junk tastes great...always has, always will. Healthy eating is all good and well but honestly, junk food is just delicious. Anyways...

La la la. April 12th arrives, and it's Groundhog Day all over again. After some sweating in the waiting room, I am ushered into a back room to assess my vision. I struggle through four measly letters on the eye chart, all the while getting annoyed with the technician who wants me to hurry up ("You either see something or you don't". Wench.). All I can think about it is promising myself a giant ice cream when I'm done with the appointment because if-they-find-more-of-those-stupid-blood-vessels-who-cares-anymore-anyway?

Eventually, it's over and the technician doesn't comment on my progress, just shuffles me into another waiting room. After waiting three hours to see the doctor, I am greeted by one of the fellows, who shines lots of bright lights into my dilated eyes. I have learned that fellows love shining lights into eyes---it is like they are starved for the opportunity to interact with a patient or something. Let's just say he literally left me crying and seeing magenta afterward. Well, I couldn't stay mad all that long because he gave me a clean bill of health and could not detect any fluid. Hooray!

And even though I've been back to office for the past six years, I bombard him with the usual questions. Any research on the cause of MFC? Nope. It's probably auto-immune. Why me? No one knows. Life is unfair. But hey, it's really bizarre that it tends to affect young women. Can I do anything about this--I'm taking fish oil caplets? Sure, why not. Go for it.

Then he says "You've got some scarring on the retina. But that'll be taken care of in your lifetime."

I pause. What? What does that mean? In my lifetime?

He then goes on to tell me, in very hush hush tones...I'm not sure why we are whispering. But he then tells me that the next big thing in macular degeneration research is retina transplants. Apparently, there are lots of old folks who have significant amounts of retinal scarring, and animal testing has yielded some promising results with retina transplants. In a mere ten years, he believes that the technology will be good enough to allow regeneration of the retina. Through the cultivation of stem cells, patients would either receive surgical transplants or injections through the bloodstream. The scarred areas would then be supplanted by new retinal growth.

I then ask him the million dollar question "Are you telling me that one day I might be able to see again?"

He says, "Yes."

Holy holy holy smokes. The fellow then leaves, and I wait another hour to see the actual doctor. But I don't care because I am picturing a life of driving, reading, and seeing things in 3-D again.

When the doctor comes in, he shines bright lights into my eyes and confirms the good news. I spend the rest of the day walking and forego the ice cream. I feel pretty good without it.

A Happy New Year...?

Today was my first eye appointment of the new year. As usual, I couldn't sleep the night before and fretted all morning. I always manage to roll into these appointments completely sleep-deprived from anxiety. (If you are in my boat, please message me and let me know that I'm not crazy.) Anyways, then I did the usual last-minute damage control by looking for healthy things to eat. That's how I ended up being the girl in the waiting room at 7:45 a.m. shoveling oatmeal and mixed nuts. By the time the technician called me in, I think I had indigestion.

When it was time to read the eye chart with my affected right eye, I was able to easily read the first three rows. (Wait, does the giant E count?) Then the fourth line came, and I couldn't do it. At first, I saw four distinct letters but couldn't make them out. Then, they got blurry. Then, some of the letters seemed to actually disappear. The technician asked me if I could see anything. Starting to panic, I told her I needed a break. So that's what we did, and then I tried again and found two letters. That was enough work for one day. She asked me what I thought of my performance, and I told her today was lousy.

One of the fellows then came in to tinker around, shine some ridiculously bright lights into my dilated eyes, and asked me how I was feeling. My eyeballs were ready to fall out of my head, they hurt so bad. I told him I felt lousy and discouraged. He told me that he thinks my scars are changing shape (great...just great) and that they can distort my vision. Then he left.

Alone in the doctor's office with nothing to do...I sat and thought. And drank my coffee. And played with the hand sanitizer. And tried to read some educational pamphlets on macular degeneration. In the hallway, the technicians and doctors were talking about how one of their colleagues just lost her husband to a heart attack...on Valentine's Day. This was not a fun doctor's appointment.

Then my doctor came in, blinded me with more lights, and asked me how I was feeling. By now, I felt extra crummy and told him I felt like I was losing vision. He said "Why do you think this?" I told him that I really struggled on today's eye chart. Then he said, "That's interesting because you actually gained a few letters compared to last visit." Somehow, some way my vision improved. To be safe, I had an OCT scan (this produces a three-dimensional cross-section of the retina), but this also checked out nice and clean! No Avastin injection today!

Before leaving, I asked him if I could get Lasik eye surgery. As someone who has had glasses since age 4, I am ready ready ready to be done with bad eyes. He looked at me and said, "No." I asked again. He said, "If you were my daughter, I would say no. Absolutely not." There is a 4% chance I could lose vision after the operation, and he said that I couldn't afford to compromise a perfectly good eye. I said, "You've been saying no to me for the past six years!" Then he laughed and said I could finally get contacts.

So, that's the next project: contacts! I've never had them. How exciting. :)

Up Close and Personal

The moment you've all been waiting for has arrived!  Well, ok, it's actually been around for while BUT I just discovered it.  Thanks to the wonders of YouTube, you can now all witness what I go through when I get Avastin injections.  Lucky you.

Take a look here. 

I was bored one day and decided to YouTube search this.  I was pretty surprised to find it actually.   Even more surprising, I found myself unable to watch the injection.  It made me cringe and feel scared for Kate.  Given that I've had more injections than I can count (and I used to), this is rather ironic.  However, I pretty much behave the same way as Kate; I don't panic or flinch.  It's very dangerous to do that actually--once, I learned that the hard way and ended up with a pool of blood that developed along the outside of my iris.  Apparently, as the needle was entering, my head recoiled, and the needle knicked me.  Though I recovered and the spot diminished, it "outed" my vision problem and I ended up having to reveal my problem to several friends in the course of one week.  

Anyways, happy viewing.  I posted it for a couple reasons.  1) I get a lot of questions about what the heck an injection involves. 2) I'm surprised it was on YouTube. 3) It's kind of fun to freak people out.  

Two! Dos! Deux! Due!

2009 may have begun as the terrible-horrible-no-good-very-bad-year, but it looks like it may end on a positive note.  (Watch, my luck is gonna turn just because I said that.  Oh brother. No more of your tricks, Universe!)

Today marks the second successful eye appointment of the year!  These days, I define successful as walking out without any vascular activity and most importantly, injection-free.  I did not make gains on the eye chart, but at least things did not worsen.  I'm "holding steady" as Dr. B calls it.

Before checking out the situation, Dr. B asked me if I thought things had improved.  I told him honestly that I did not know.  Secretly, I feared that my eyes had worsened.  I've been eating a lot of junk lately and not really taking care of myself.  The heartache of the World Series meant that I treated myself to pizza and ale while staying up way past my bedtime.  A few weeks ago, I fought a nasty cold and graded an insane amount of student work.  Then Halloween happened, and I'm left staring at a cauldron of candy that smells good even through plastic wrappers.  I don't think the guilt really hit until last night, which was spent worrying over everything I had done the past three months.  This resulted in feeling bad about not sleeping and what that would do to my eye blah blah blah.  Basically, I worried about my worry.  Unproductive but it happens.

But ta-da!  Great eye appointment, and I'm not due to see the doc until February.  

So, I'm left with a couple questions:

* Is my diet truly working?

* Maybe my diet works...but not necessarily the whole  of it?  Do I really need to eliminate meat and flour?  Or are my pharmacy-grade fish oil capsules doing a great job?  Funny, I'm also asking these questions as I munch happily on my celebration snack of bread, cheese, and prosciutto.  Oh, I missed you prosciutto!  How great would it be if I could eat bread and meat as much as I wanted?!?

* Maybe the decreased stress levels are at work.

* Or, as Dr. B insists, Avastin and Lucentis are the true miracle workers here.

Ominous News

I usually check out the New York Times' "Health" section for healthful (and often anti-inflammatory) recipes.   What I found today was disturbing.  Before I could even check out a recipe, I was distracted by another link.  Check out this alarming article on curtailing Avastin's use.

I know this article mainly pertains to Medicare, but I can't help worrying.  What may this mean for me and my insurance coverage at some point in the future?  

Avastin has been the only treatment that has worked for me.  Granted, my doctors and I have not found anything close to a cure for whatever this Multi Focal Choroiditis may be...however, the Avastin has often staved off blindness in a pinch for me.  To complicate matters, at my last appointment, I was told that my insurance was not pleased with my latest Lucentis injection and threatened to pull my coverage on that one.   The NYTimes article hinted that doctors would then be encouraged to switch to Lucentis, which I definitely can not afford at face value.  If I now am in danger of losing Avastin, this could be very bad, no good news...

The Hidden Wonders of...Turmeric?

During one of my crazy internet-searching frenzies last month, I came across a message board hosted by the American Foundation for the Blind.   Here I found some folks who also suffer from MFC.  Most of the posts were full of confusion: Why was this happening to me?  What is your life like now?  Should I keep going with the prednisone?  

Then, like this little gem, I found a post from a woman who claimed to have been cured!  By turmeric!  She went out and got turmeric supplements as a natural remedy to her MFC.  In as little as a month (!!!), this woman halted her MFC and even regained some vision.  This was and is a little incredible.  I sat on this bit of information for a couple weeks, vowing to stick with the new diet for now before involving supplements.

Then I found myself in front of a Vitamin Shop and the next thing I know, I'm purchasing a 30-day supply of turmeric supplements.  A bit of research into this spice revealed that it's famous for its anti-inflammatory properties.   I found another article that connected turmeric to the remedial effects of Indian cuisine, which is great because I love Indian food.

However, I've always been lousy at remembering to take daily pills (apologies to all those forgotten antibiotics), so this could be tough.  The pills are large and smell strongly of turmeric but they don't taste strong.  So, here's hoping.

A New Year, A Lifetime Resolution?

Hello and welcome to my blog! I hope that this will be a meaningful attempt to keep track of and reflect upon my experiences with an anti-inflammatory diet. For approximately five years, I have been suffering from Multi-Focal Choroiditis, a poorly understood condition which produces inflammation of the retina. It is my hope that this new eating lifestyle will decrease and manage MFC.

Much of my battle with MFC has been very passive, waiting for doctors to prescribe prednisone, laser treatment, or Avastin injections directly into my eye. When symptoms flared up, I went to the doctor and recieved some type of drug. The drugs would usually keep the inflammation and leakage under control for a few months...and then I would repeat the cycle. I resigned myself to living this way for the rest of my life. Eventually, I knew the inevitable would occur: full blindness in my affected right eye.

Part of me did not worry too much. In 2004, when all this began, I told myself that technology and research would advance in the coming years. For now I would be a medical mystery but one day, there would be a "cure".

In December 2008, I had a disheartening appointment. The inflammation in my eye was flaring up again...something it had not done in years. My doctor admitted that he had no answers for me, and the appointment ended with yet another Avastin injection. I went home and immediately began researching everything I could find on MFC and found helpful community support groups. A small handful of posters mentioned the remedial effects of an anti-inflammatory diet. The basic philosophy guiding an anti-inflammatory diet is that our body's ability to produce anti-inflammatory hormones has been thrown out of balance with the introduction of pro-flammatory foods. By restoring our body's natural balance through the introduction of healthy food, inflammation could be kept at bay. I was intrigued.

Here it was: potentially a way for me to take this condition into my own hands. Almost five years after my diagnosis, I knew I could no longer wait for a medical miracle to fall out of the sky. It was hard not to wonder: was this trick--eating healthy--something I could have done so long ago?

Curious, hopeful and above all desperate, I rang in the New Year with a lifetime resolution to eat healthy. As someone who generally shuns resolutions, this one should be interesting. I invite you to read my blog and share your own experiences. I extend an especially warm welcome to my fellow MFC-sufferers...perhaps we can begin answering our own questions about this very serious condition.

I will use this blog to not only report out on my reflections but also to share information about helpful books, recipes, and websites.

Happy New Year!