A Lukewarm Appointment

Last Monday, I had an eye appointment to track the progress of my eye. After going through the usual pre-appointment anxiety attic (which included getting short with some of my students), I finally trekked on over to the doctor's. Here, I found out that my referral had never been processed, thus risking a cancellation of the appointment or forking over my credit card to absorb the charges. I figured that I wasn't going to waste all my time and anxiety, so I handed my credit card to the receptionist.

The day was off to a grand start.

Eventually, my eyes were dilated, and I was ushered into a technician's office. While I had 20/20 in my left "good" eye, I struggled to read pretty much everything with my right eye. I began to get a sinking feeling in my stomach, but I told myself that perhaps something had changed when I switched out my usual contacts for my occasional glasses. It was a nice consolation until I remembered that I read perfectly with my left eye.

The sinking feeling persisted when I finally saw the doctor. He was taking an awfully long time examining my eyes. Then, he took out a wooden stick and rammed it just below my bottom lashes to keep me from involuntarily flinching. It was becoming an atypical examination. Furthermore, he kept directing me to look down, leading me to believe that he saw something troubling.

While he did not see any evidence of wet macular degeneration (wet = presence of blood), he did notice that my vitreal jelly had begun pulling away. This means that I will most likely face a retinal detachment. However, whether the detachment occurs today or in a few years is unknown. All we could do was monitor it and hope for the best.

So, I'm calling the appointment lukewarm. I left without an Avastin injection, which is always good. But I also left knowing that my retina can detach any moment now. I am also beginning to wonder whether my right eye will always cook up something new for me to fret about. The complications seem endless and as I approach my 8th anniversary since diagnosis, I begin to wonder what else may be in store. 8 years sounds like a long time, but I'll probably still live much more than 8 years. What else can happen?

Simple Soba Soup

Here's a simple soba soup that is chock full of nutrients!

The recipe begins with a homemade vegetable stock, so this is a great way to use up all your veggies and scraps. I also love that it's nutrient-rich from beginning to end, making this a very healthy anti-inflammatory soup. Mushrooms are the winning star in this meal, so add them liberally!

Simple Soba Soup

The Stock:

5 c. cold water

2 onions, halved (opt for flavorful varieties like red and Spanish)

5 garlic cloves, smashed

3 carrots, roughly chopped

a large handful of mushrooms*

1 Tbsp. of soy sauce (optional)

1 egg, lightly beaten

a handful of soba noodles

1/2 cup corn kernels

1 carrot, sliced into thin circles

a large pinch of wakame**

* I like to use dehydrated shitake mushrooms, widely available and affordable in Asian markets. These are a great way to make a rich and flavorful stock without the high price tag that often acccompanies mushrooms. I freely use these in my stocks.

** Wakame is a type of Japanese seaweed and also found in many Asian markets, at a fraction of the price. Once hydrated, wakame swells into thick sheets, adding a nice texture to the soup. It is at once subtly sweet and slightly salty.

Fill a large pot with water, and toss in all vegetables. I like to add a pinch of salt here to help the vegetables release their flavors. Bring the mixture to a boil and then cover and simmer for at least an hour. The longer you simmer, the more flavorful your stock. My clue is to look for a deep brown broth color.

Once the stock becomes sufficiently flavorful, discard the vegetables and bring the broth back to a boil. Add the soba and cook for approximately 6-8 minutes. Soba should have a tough texture, so be careful not to overcook. While the soba is cooking, add the carrots and corn.

Toss in the wakame. Stirring the soup, add the beaten egg. If stirred continually and quickly, the egg will blossom throughout and give the soup some "egg drops".

For extra protein, I sometimes add small squares of silken tofu. However, if you may have to add more broth as the soup can become quite crowded.

Healthy Vegetarian Sandwich

As I began looking for healthier ways to approach my lunchbox, I realized that it was difficult to find a meal that was filling, convenient, and healthy. Eating dinner leftovers can get routine, so I began brainstorming ways I could create a healthier sandwich.

One day, I decided to opt for lunch at a local vegan spot and grabbed a Mock Chicken Club. I was pleasantly surprised to find that it was not "mock chicken" but actually a thick slab of tofu, which keeps in line with my low-processed food limit.

Try this tasty sandwich, and let me know what you think!

Tofu Club Sandwich

hearty multigrain bread

light mayonnaise

basil pesto

olive oil

1 container of extra firm tofu

three slices of vegetarian bacon

baby spinach

1. Slice the tofu into 4 large triangles of equal size. I usually slice a rectangular block of tofu in half, to make two thinner rectangles. Then, I bisect each into two triangles. Dry each piece thoroughly

2. Drizzle olive oil on slices. Bake tofu in a 400 degree oven until pieces are chewy and have formed a golden firmness. You can also add slices of veg-bacon in the same pan, but make sure to take it out after 10 minutes. Let cool.

3. Mix mayonnaise and pesto together in a bowl. I like to mix to taste but I find that 2:1 ratio of mayo to pesto adds a nice flavor.

4. Spread the pesto-mayo mixture on bread, add two tofu triangles, veg bacon, and generously heap baby spinach on top. Slicing the bread into triangles (following the tofu slices) makes for a hand-y sandwich!

* If you don't have pesto handy, you can also use hummus or whole-grain mustard as a flavorful spread. I also like to add mustard to the pesto mixture for extra kick.

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.