I’ve Launched the New Site!

Come on over and check out my new site: MySuddenSight.com!

I’ve included four new sections: Healthcare, Self-care, Food+Lifestyle, and Healthy Home. Plus, I’m looking to add a podcast this summer to talk one-on-one with individuals living with chronic illness and allow them to share their beautiful stories, and to talk with health professionals in all aspects of the industry to better understand how chronic illness is dealt with and how we can utilize the health system to its fullest extent.

There is still a personal blog section, with a separate place for all the blog posts you loved here at Sudden Sight plus a new section titled My Alimentary Adventure, all about the next few months of my life spent tackling chronic illness with all the best that science and nutrition has to offer.

Hope to see you over there soon! And don’t forget to subscribe to my new quarterly e-newsletter via the sidebar widget on the new site.

Warm wishes and best regards,

Alexandra

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New Year, New Sight

Happy New Year, readers!

I have some good news, some bad news, and some potentially exciting news….

The Good News: The site will indeed be moving, diversifying, and getting more consistent. I have purchased MySuddenSight.com and am in the process of building the site. The new site will include guest posts, health articles, some of my favorite recipes, and podcast interviews. Plus, of course, my personal blog posts. I had intended to launch a bit sooner, but…

The Bad News: My eyesight has been diminishing in the past few months. The translucent epithelial layer (eye skin) over my left cornea (the one I see out of) has been clouded for a long time. My eye doctor has been saying for some time that my eyesight should be 20/100, but somehow my brain has been compensating to 20/40. Even 20/30 on a good day! Unfortunately, the clouding has finally caught up to me. It started with enlarging my computer screen. Then, I stopped driving at night. About three weeks ago, things shifted pretty quickly for the worse. I’m not driving at all. I can’t do much at all without my scleral lens.

I have surgery scheduled for January 13. My surgeon will be removing the cloudy epithelial cells in the hopes that they will grow back clear. The recovery time is about two weeks with a Prokera – a plastic ring with amniotic membrane strung across it that gets inserted into the eye socket to encourage healing. Fun. Times.

The Potentially Exciting News: I may be a good candidate for ocular stem cell replacement. I will do a more thorough write-up later. For now I will say my Atlanta doctor called me on Christmas Eve to tell me he’s been in touch with the only doctors in the world who are doing this surgery. They are figuring out medical and legal logistical while I’m figuring out how to pay for probably three trips to Milan.

See you on the new site!

My Sudden Sight

eyes2Last night, I watched the movie Cake, which stars Jennifer Aniston as an ill-tempered woman dealing with chronic pain. Seeing her move slowly and robotically, small gasps with every effort, brought back some difficult memories. But also a clear sense of strength and of hope.

As anyone with chronic pain can tell you, it becomes so much more than a physical nuisance. As hours turn into days, days into months, and months – sometimes – into years, even the smallest discomfort becomes a nagging, petulant child. It sears through your every thought and bears down, constantly testing your emotional capacity to function like an average human being.

For me, waking up has been the hardest part of my day for 7 ½ years. Right now, I wake up sluggish, but with minor discomfort. The dryness in my eyes is easily cured with a drop or two of TheraTears and some eye-rolling to work the solution around. It didn’t used to be so easy. Immediately after the hospital, before I started wearing soft lenses to protect my eyes from the rough scars on my eyelids, I would wake up to near unbearable pain. I would spend an hour or two just praying to go back to sleep so I didn’t have to open my eyes.

The room at my grandparents’ was dark, its single window shaded, and I had a bathroom to myself. Most mornings I would get up, use the bathroom, and start getting ready to walk downstairs without opening my eyes. It was still painful, but not as painful as having to open my eyes. Certainly not as painful as blinking or walking into the main part of the house where the harsh sunlight pelted me with rays like acid.

After each surgery, things seemed immediately worse, then better, then worse again. The pain pills masked the abating pain for a week or two, and the high doses of Prednisone kept the inflammation at bay until I had to taper down. I quickly discovered that pain pills work best when you stay on schedule, even setting an alarm to wake you up in the middle of the night. Otherwise, you wake up crying out loud from the pain – in my case, tearless.  There are still some days when I hit a rough morning, take some acetaminophen, and wait another 30 minutes for it to kick in before opening my eyes and starting the day.

Regardless of whether or not I wake in pain, the fear of that pain lingers. After a year or so, thick scar tissue grew across my right cornea, and I eventually convinced my doctors to let me wear the soft lens in my left eye full-time. The pain lessened, and there were even some days that I felt in control of it. But the fear of that pain remained. With each slight discomfort came a wave of adrenaline and the frantic thoughts of how to stop the pain before it started. There was one year where every Wednesday, it seemed, I would come home and have to lie in a dark room for an hour, forcing my eye open with my fingers to put in drops every so often until the pain became bearable. It was like a timed migraine radiating from my left eye socket. They came untimed, too, forcing me to lay my head down on the desk at work in between customer service calls, covering my face with my arms to block the florescent beams.

But that was four years ago. I have come so far since then. If had you told me then that I’d still be fighting to recover, but functioning on a much higher level now, I’d have shed liquidless tears of joy and unrelenting dread.

Pain is more than nerves firing to tell your brain something isn’t okay. Pain is a trigger for reaction – bodily and emotionally. Pain that returns again and again is the harbinger of a fear that sits deep in your thoughts for maybe the rest of your life.

In the face of all that pain and fear, it can be difficult – impossible – to find hope that it will ever end. Four years ago, I did give up hope. I told myself that the pain was my new life, and I would just have to learn to deal with it. Without that hope, the pain overwhelmed me, and I nearly drowned in the worst depressive episode I’ve ever experienced. I wish I could say there was a moment where everything changed and suddenly my passion for life revived! It was, instead, a slow and grueling climb back to some semblance of normal.

There was, however, a moment that gave me the first taste of hope I’d savored in a long time. In May of 2011, I saw a new surgeon in Miami whose procedure (briefly) gave me sight again in my right eye. The surgery didn’t take, and the scar tissue grew back. The pain lingered, and the depression got worse before it got better. And yet, there was this one week were I began to recognize the faces of my loved ones again. It was enough.

I believe, now, that is what I meant when I started this blog and named it “SuddenSight.” It is that moment of hope, that brief flash of light from a tiny hole to world of “normal.” Removing the bandages and correctly counting the nurse’s fingers with my right eye for the first time in three years – that was my sudden sight to hope again.

What’s yours?

Sweet Treats

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On cold, rainy days like today I promise myself cardamom chai from Revolution Doughnuts to drag myself out of bed. That’s not to say I always end up there, but today I did, and they had their low-gluten, low-grain* dough-nuts!

This AIP paleo thing has been rough, but step by step I’m feeling better. It’s all about making your life choices work for you.

*They say “low” because they make the dough-nuts in the same kitchen with all their other products.

Cheaters Never Prosper

Let’s face it. Elimination diets are hard. Really hard. So let me recount what has happened on the days I’ve slipped up….

Cheat #1: Sushi. I knew gluten was something to avoid, sure, but I didn’t altogether believe the whole “grain-free” need. Until I ate sushi one night. My joints ached for three days.

Cheat #2: Donuts. I was trying to be so good. I went to Revolution Doughnuts (who, by the way, have delicious low-grain/low-gluten donuts, if you don’t have a nut allergy). Unfortunately, they were out of the “dough-nuts,” so on a whim I got a few of my favorites. Cake-style Vanilla Bean, yeast-style Cinnamon Sugar, and a Cinnamon Apple Fritter. In just a few hours I was exhausted and achy. It lasted for days.

Cheat #3: Choco-Pie. Not having eaten all morning, I couldn’t resist this Moon Pie-like treat a friend had brought in for class. I went home immediately afterward and slept for three hours in the middle of the afternoon.

I saw the rheumatologist last week, My RA is at a moderate level, so we’re having to up my dosage of Remicade to the highest possible amount and consider new treatments. I spoke with my doctor about the AIP (autoimmune protocol) diet I was trying, and she said it was a great idea.

I know what I need to do. I know what foods I need to avoid.

It’s difficult.

AIP Apple Spice Bread – Going Paleo Deliciously

wpid-img_20151004_185248.jpgFall and winter are easily the most difficult times of the year to avoid grains and gluten. As someone who adores baking – for the smells and the flavor and the relaxation of it all – going AIP paleo has been rough. Bordering on impossible, really. My search for AIP baked goods (that actually taste and feel like baked goods) has been difficult and frustrating.

Finally, I have discovered something worth sharing!

When I was growing up, a dear friend’s mother would bake the most delicious pumpkin bread. For whatever reason, that pumpkin bread recipe came back into my life this week. My first thought was sadness that I had finally procured this delicious recipe but would be unable to bake and eat it. But then something about the recipe caught my eye…

It requires two packs of pudding. Pudding means gelatin. Gelatin holds things together. Maybe this could work! So I began to dig through posts on the internet for tips on substituting flaxseed for eggs and how to make pudding from beef gelatin. Because I didn’t have pumpkin on hand, I decided to substitute with applesauce.

And viola! This recipe was born.

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AIP Apple Spice Bread

Ingredients
wpid-img_20151004_185436.jpg5 TBL flaxseed meal (works better if the flaxseed is freshly ground)
3/4 cup coconut milk (or water)
1 cup oil
1 cup applesauce (or pumpkin or mashed ripe bananas)
2 cups coconut sugar
1 tsp vanilla (omit if using vanilla coconut milk)
2 TBL gelatin
plus 1/4 cup additional coconut milk
2 cups coconut flour
wpid-img_20151004_185345.jpg1/2 cup tapioca starch
2 tsp baking soda
2 tsp cinnamon (1 tsp for banana bread)
1/2 tsp nutmeg (omit if making banana bread)
1/4 tsp ground cloves (omit if making banana or pumpkin bread)
1/2 tsp salt

Step One: Set the oven to 350 degrees Fahrenheit. Grease two 5 x 9 inch pans with solidified coconut oil or palm shortening.

Step Two: Mix flaxseed with 3/4 cup coconut milk. Set aside to gel.

Step Three: Mix oil and sugar. Add fruit purée and vanilla.

Step Four: Mix gelatin with 1/4 cup coconut milk. Set aside to gel.

Step Five: Mix together all dry ingredients.

Step Six. Combine flaxseed paste with gelatin mixture. Fold into wet ingredients. Stir in dry ingredients.

Step Seven: Smooth into greased pans, being sure to evenly distribute the batter. Bake for 65- 70 minutes until a toothpick inserted into the center of the loaf comes out clean.

Enjoy! I highly recommend slathering a slice of the bread with coconut oil. So good…

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*If you try the recipe and find out something different works better for you, please let me know!