Hello again.

It has been a really long time since I last blogged.

I thought that 2009 was a bad year. But then, 2010 came along just to prove me wrong. It was not kind, and I spent most of that year trying to cope with the sadness that comes with losing loved ones. Keeping up with my blog became difficult, and I thought less and less about my vision situation. I ate terrible food...sometimes, I did not eat. I didn't exercise. I didn't sleep. I hardly saw friends. Most of the time, I was very stressed.

I still kept up with my doctor's appointments, however. And it was strange because in the midst of my toughest time, my vision did not worsen. This was confusing, as I was certain that my extraordinary stress levels would usher in a wave of inflammation.

At the time, I was mainly relieved that I did not have one more thing to worry about. My energies were being devoted elsewhere, and I really did not have time for Avastin injections, waiting my eyes to adjust after dilation, going to the pharmacy to fill prescriptions, etc.

As time went on, however, I realized that something very significant was happening.

I am trying to figure it out. After all, I began this blog with the intent to track my diet and see how it might positively affect my MFC. Throughout 2010 (and a good chunk of 2011), I ate some really junky junk. I'm talking Fried Chicken and Waffles--for brunch.

Perhaps the diet was just a theory.

A part of me was happy--I could eat processed flour and meat and dessert! So, I did, and it was really all just delicious. But a few months ago, I started feeling suspicious. Lately, I just don't trust the universe. A nagging feeling sometimes comes over me that my MFC will come back with a vengeance, spurred by my terrible eating habits.

So, I am reframing my relationship to MFC and my diet. I've decided that I will not strictly adhere to my anti-inflammation diet. During the week, I make a concerted effort to eat very healthy--mainly vegetarian or pescetarian, whole grain. and low-sugar. On the weekends or when socializing, I eat and drink mainly whatever strikes my fancy. Most of the time, however, I eschew dessert or only have one bite. I drink lots of green tea and take my Lovaza pills daily.

I'm trying to be better about my diet, though. If anything, I'll be healthy on many levels. On that note I will share with you what I ate for dinner tonight:

Roasted beets

Potato and Onion Pierogies (I limited myself to 5 pieces)

Baked Spaghetti Squash w/ carrots, sugar snap peas, and feta

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.  

A New Year, A New Start (Again)

Happy New Year!  Goodbye, 2009--Year of Crummy Health!

It's 2010 and yet, I find myself woefully in a similar position to where I was one year ago.   To make a long story short, November and December were not diet-friendly.  I ate everything I shouldn't have, including products with high fructose corn syrup.  I visited McDonald's twice in one week.  It was delicious--I won't and can't lie about that  But, Oy.  It was ugly.

And I have an eye appointment coming up.

So, welcome 2010!  I am trying to return to my anti-inflammatory diet with mixed success.  Now that I am often eating dinner on the go, I realize just how difficult healthy eating can be!  Yikes.  Eating a sit-down dinner is quite easy, but now my best options seems to be take-out salads with grilled salmon.  

On that note, I've posted a picture of a soup I made last weekend.  From Eating Well, this Collard Green & Black Eyed Pea Soup will keep you full and warm.  Because I am using collards for a different recipe, I substituted my favorite--kale!--instead.  I've been eating the soup for lunch, paired with a multigrain ballard from Whole Foods.  Also, don't fret about the recipe's cheese toasts.  Yours Truly forgot the shopping list last weekend and couldn't remember to buy the cheese.  The soup is pretty tasty with a simply bread.  

Healthy Fall Soups

I have been celebrating Fall (or the little that's left of it) by cooking up some healthy soups.  Though the two soups look a lot alike, they are radically different in taste.  I need a new digital camera so everything seems to look yellow-orange these days.  

The first soup is a Curried Sweet Potato Soup.  I don't particularly care for sweet potatoes but begrudgingly bought some because they are touted for being anti-inflammatory.   This soup was excellent and very easy to prepare.  My only adjustment to the original recipe was in the way I roasted the potatoes.  I used the Cook's Illustrated method because the potatoes caramelize so well--trust me, you will eat these like candy.  The resulting soup was very flavorful with hints of curry that are balanced out by the sweetness of the potatoes and coconut milk.  Make sure you eat this soup with lots of bread or with another side; though delicious, it's not particularly filling.  My roommate has adapted the original recipe by substituting pureed pumpkin for the sweet potato.  She swears it's tastier than sweet potato.  I dislike pumpkin even more than sweet potato, so I'll just stick to the original.

The second picture, a pureed chickpea soup, was hearty and satisfying.  No need to strain the soup--it's still tasty.  Besides, who has time to strain hot soup?  From soaking to actual cooking time, this soup took an eternity to make.  I was too hungry to strain it!  Just make sure you stir the mixture when reheating as it tends to separate over time.  As you can see, I like to eat my soup with lots of bread (sssh. I am not supposed to eat too much refined white flour).  Whole Foods makes an affordable Artisan Ciabatta loaf that rings in at under $3.  I couldn't resist.

S-L-O-W Reading

As promised, I have started to use my eye patch on a somewhat regular basis.  This is a way to keep my eye from a type of atrophy. Because the vision in my right eye is so compromised, a big concern is that my brain will "forget" I have two eyes.  Thus, even though I do still have some vision in the affected eye, there's a chance that my brain will get too tired trying to use a gimpy eye and just switch fully to my left, un-affected eye.  The result: full blindness--regardless of how much vascular or inflammatory activity I may actually be experiencing.

My goal is to finish reading Gilead by Marilynne Robinson using only my right eye.  I have about 100 pages left to go, so this could take a long long while.  Why this book?  I actually started reading it a while ago but tend to put it down after a few pages because it makes me drowsy.  The book is actually not bad, just very quiet in tone so I tend to zone out.  I figured that I probably won't be able to read more than a couple pages with the eye patch on anyways, so it would be an ideal read.  Secondly, though the print is pretty standard (12 pt), the lines are double-spaced and much easier on the eyes---errr, eye.  

The other night I tried reading as much as I could before I became completely exhausted.  I survived only two pages before I thought my eyeball would fall out.  It took me about 10 minutes to piece together the two pages.  Afterward, I re-read the passages with both eyes to check my comprehension.  I discovered that I tend to have the greatest difficulty with the text near the margins of the center book binding.  This makes sense because I no longer have central vision in my right eye.  

All in all, not a bad experience I guess.  It was frustrating when I couldn't make out some letters no matter how hard I tried.  But it was comforting to know that I could read some text, even with a lot of effort.  Above all, it made me grateful that I still had one good eye.  What a difference it makes to still have one completely unaffected eye...