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?

Trapped

Today is a bad day. For those who know what I mean, let’s just say I woke up without any spoons left. My head ached, my eyes were blurred and pained by the small light streaming through my window. It was a feat simply to look at the extraordinarily large numbers on the face of my cell phone, telling me I slept hours later than intended. It almost seemed worthless to get out of bed at that point. But I’d made a promise.

A good friend of mine has been pushing me to get back to counseling and made me promise I would go today. I know he’s right, but the thought of walking into the counseling center on campus feels like I’m admitting to failure. I’ve worked so hard just to reach normal, yet here I am back at square two and need help now more than ever. Some days are like this.

I tell people constantly that it’s okay to ask for help. It’s the strong thing to do. And yet, it feels so weak. It makes me so frustrated to admit that the stairs I’ve been climbing day in and day out have suddenly grown three stories higher, and I can’t see the top anymore. It all feels so out of reach.

But I made a promise. This is why we have friends. This is why we have support systems, because if it were only up to us, then the day would come when we would give up. I remind myself that there will always be days when alone I would give up, I would let myself stay trapped inside my head and locked inside my faulty body. My joints ache, the pain in my eyes is searing, but the feeling of worthlessness and failure with each of the half-dozen pills I take each morning is what really does me in. Those support systems are what hold us accountable for getting up and getting out of our heads.

It would be easy to stay in bed. It would be easy to keep all this frustration inside. It would be very easy not to post this. It is very easy to slack off on holding ourselves accountable and to wallow in self-pity, cursing the cage of pain and frustration. But that easy route will never free us.

Some days are difficult. Very difficult. That’s why we have friends, family, and other forms of support like you, my dear readers, to hold us accountable when we are too weak to do it ourselves. And so, after an hour of tears and pain, I am up. I have taken my daily medications, and I am getting dressed and venturing out into the world to tack on yet another branch to my support system: a new therapist.
When it’s hard to get up, reach out for a hand to pull you out of bed. When it’s hard to ask for help, find the person you can trust to force help on you even when you can’t ask. When it’s hard to speak up about what’s keeping you trapped in your own head, search for some way to get it out of you. Find the words. Build your support system.

Keep getting up.

Pressing the Reset Button

handNow and again, there comes a time when we just need to take a breather and hit the reset button on life. Frustrations mount, stresses build, and complications twist everything into a knotted, tangled mess. You can’t always walk away from your stressors – usually you can’t – but you can take a step back. You can take a moment to yourself and reenter the situation with a fresh perspective.

This month, that’s exactly what I’m doing: Resetting.

Resetting My Body – Starting AIP

For those who have been following the blog for awhile, you know that I’ve had trouble with chronic fatigue for about a year and a half now. For months at a time, I would need 10 to 14 hours of sleep every day. Even awake, I wandered through life in a fog, exhausted and unmotivated. Two things entirely contrary to the life of a grad student!

carbsWhen my doctors couldn’t figure out what was wrong, I decided to take my health into my own hands. I started researching my symptoms and found the autoimmune protocol paleo diet. No grains, no legumes, no dairy, no nightshades, and no starches. Yikes! As someone who has spent most of the past 10 years as vegan or vegetarian, it was pretty scary to think about eating animal flesh at every meal. However, all of my symptoms kept pointing to the AIP as a way to reset my digestive system and stop the extreme autoimmune reactions causing my fatigue and inflaming my joints.

This past weekend, I celebrated my birthday with all my favorite foods! Ice cream, cupcakes, pasta, chocolate… 28 never tasted so good. September first marked day one of my 30-day AIP reset. I’ll be updating SuddenSight with my posts about the experience, so keep checking back for updates!

Resetting My Mind – Taking a Step Back

The fatigue, as well as numerous setbacks with my eyesight since January, made finishing my master’s degree this summer, well, difficult. I did manage to turn in everything and have my paper accepted (hooray!) Still, moving forward I decided I needed to recognize my physical limitations.

Even on my good eye days I read at half the speed that others in my program read. When I’m sleeping 10 hours a night, it becomes virtually impossible to keep up with the 60 to 70 hour work week required to keep up with three graduate classes and teach a class. So I took a step back and slowed things down for a bit to let my body catch up.

I’m only taking two classes this fall, and I’m pushing myself to make more time for yoga classes and cooking – my favorite relaxing hobbies.

Resetting My Blog!

ice creamTaking all of this into account, I’ve also decided to shift the focus of this blog a bit. I don’t want to spoil too much, but this fall SuddenSight will be relaunching with an all-new look! Get ready for more health and lifestyle posts, a recipe section, and guest bloggers featured each month.

Stay tuned for more news!

How to Throw Your Best Pity Party Ever!

538524_10100307570358459_563922595_nYou just found out your best friend has been sleeping with your significant other. Your cat has the flu. Your job promotion went to the guy two cubes down who can’t even find AutoSum in Excel. The fecal matter has found its way up and into the proverbial fan, and life seems like it just can’t get any worse.

We’ve all been there. From tragic hair days and fender-benders to volcanic eruptions of hot messes, sometimes the only thing that can truly make you feel better is a party. A Pity Party, that is!

I know what you’re thinking: wadded up tissues in front of a Meg Ryan marathon with a gallon of Moose Tracks slowly melting into sugary-chocolate soup nearby. But a Pity Party doesn’t have to be a cliché. There is so much you can do with this traditional fête!

So dab your bleary eyes, roll up those snotty sleeves, and let me guide you through the magical makings of a Pity Party miracle.

Step One: Theme

More often than not, a Pity Party is spontaneous and comes with its own pre-packaged theme delivered to you FedEx á la Universe. When this happens, there may be little else to do than dress it up in a sparkly sweater while calling your mom. But that doesn’t have to be the end! Yes, the given theme might feature cancer, but that doesn’t mean you can’t accessorize with adorable puppy photos from the Internet. I find that puppy-themed pity parties are best when you make sure to avoid adoption websites – else you end up with a new furry friend (or ten).

If you’re having a real downer, you might set the mood with Alanis Morissette’s Jagged Little Pill album or Beyoncé’s feminist power-ballads (for anger) and Adele’s first few hits or some old-school Goo Goo Dolls (for subtle angst). If you’re feeling really down, you can always break out Babyface, Tori Amos, or the big guns: “Here In Heaven” by Eric Clapton.

Whether your Pity Party is intended to cheer you up or help you let out all the frustration, choosing the perfect theme is key.

Step Two: Decor

What would a party be without the proper decor? Even fraternities have learned to spice up their keggers with Tiki torches and brightly-colored leis. Once you have your theme, decor and wardrobe are your primary means of of setting the tone.

First things first: what are you wearing? My personal favorite outfit for pity parties is a long evening gown, accessorized with a sparkly tiara and bottle of cheap champagne. If you’re in a darker mood, you might try slapping on some thick black eyeliner and crawling into some pj’s from the bottom of your clothes hamper. Nothing says “Pity Party” quite like raccoon eyes and the strong, sour odor of cotton that’s been soaking in B.O. for the past week!

You may go with the traditional look of spreading boxes of tissues throughout your apartment. In that case, you might consider dressing up this version of the Pity Party with monogrammed handkerchiefs. I also highly recommend the childlike solace of a sheet fort, where you can blubber in privacy beneath a linen canopy to block out any and all happy light from the outside world.

Yet another route may be to decorate the living room with Styrofoam boxes of old Chinese food and the remnants of ripped-cardboard “plates” salvaged from multiple delivery pizzas. Which brings me to my next point…

Step Three: Food

As aforementioned, ice cream is the traditional food du jour, served with any and every type of alcoholic beverage. However, there are a multitude of flavors and brands to choose from! Fear not the option of buying several pints when you cannot decide on just one.

Beyond the world of cold and creamy lies a variety of comfort food choices: macaroni and cheese, chicken and dumplings, apple pie, chocolate cake, strawberry cake, cheesecake, carrot cake, really any kind of cake, truffles, salted caramels, lemon bars, candy bars, peanut butter from the jar… You get the idea.

Whatever you serve, just be sure it has enough calories to sustain a horse.

Step Four: Invitations

This may well be the most important part of the Pity Party. I recommend quality over quantity in your guest list. Know that pity parties can be difficult to fill, but they certainly let you know who really matters in your life. Do not be too upset if someone declines; much like Santa Claus, you can put them on a different kind of list later. The important thing is that you surround yourself with exactly the right people.

Or, if you prefer, lock the door and turn off your phone. Give yourself some time to quiet the madding crowd out of your thoughts, and allow yourself to bask in the rich emptiness of a party of one.

In all seriousness, take note of your Pity Party for exactly what it is, and be careful to remember exactly what it is not. It’s okay to take a moment (or an evening) to be upset and frustrated, to cry or shout at the television, to be selfish for a split second in time. Just make sure you’re using good coping skills and not distorting your situation too far out of proportion. Only invite those nearest to you to participate, and don’t leave them cleaning up the mess when you’re finished.

Know that at the end of the day, the world is still turning on its axis. There will always be someone out there worse off than you and someone better off than you. There will always be things worth crying over, but there will also be many things worth smiling about.

So take your moment. Have your party. Then throw out the trash and move forward with tomorrow. Embrace your life – whatever it may be.

Fighting Fear, Fighting Frustration, Finding the Silver Lining

I finally made it home today, one week after going to the doctor to check on a fever. Funny how a checkup can turn into a brief hospital stay. Not so funny how a few nights in the hospital can bring back so many memories and ignite so much fear and frustration.

Last Sunday, I woke up at 6am with a fever of 102. I texted my mom, and at her behest took some acetaminophen. Luckily, this kept the fever down and manageable for most of the day, but when I awoke the next morning with a fever of 99.5, I knew it was time to get it checked out. If I were someone else–someone without a crazy medical history, someone who didn’t owe my daily comfort to an immunosuppressant–I probably would have ignored the fever and just spent a second day in bed. How bad can a fever be, after all? Apparently, it can be an indicator of something pretty serious.

I drove the hour to my GP (because, let’s face it, once you find a doctor you like it’s really hard to switch to a new one when you relocate). She ordered several tests and cultures, so I decided to stay the evening with my grandparents, who live close by. That evening, I was still feverish, but I enjoyed the comforts of staying with my Nana, including her delicious cornbread. Normally, I try to stay gluten-free, but I have a particular weakness for Southern cornbread, especially when I feel ill. It turned out to be a good thing that I stayed the night. The next morning my doctor wanted to retest my white blood cell count. When it came back just as low as the day before, she requested I admit myself to the hospital.

A Quick Note on WBC Count

Your blood is made up of several different kinds of cells. Your red blood cells carry oxygen and nutrients to your body. Your platelets help patch you up when your body is cut by coagulating in the wound. And your white blood cells (WBCs) help fight off infection. Your WBCs are further broken down into types: some WBCs fight infection while others carry the infected cells to the infection-fighters. The carrier WBCs are called neutrophils, and a low neutrophil count is called neutropoenia., usually an early indicator of leukemia or an anomaly caused by certain medications.

My doctors explained that they normally like to see neutrophil counts above at least 1,500. Mine was under 400. And so I was admitted to the hospital…

After the Hospital – Deja Vu

I was admitted Tuesday and released Saturday. My fever diminished, and my white blood cell count rose enough to pull me out of neutropoenia. I thought that would all make me feel better, but somehow I’ve found myself much more uneasy than expected. Physically, I feel mostly fine. A little more tired than normal, but fine overall. Emotionally, however… I have seen much happier days.

Being in the hospital, even for a short time, reminded me of the vulnerable, fragile feeling of suddenly not having control over my everyday actions. It brought back memories of wanting so desperately to escape, to wake up and have the nightmare be over. The loop of late-night IV drips and the constant stream of different doctors and nurses rushed into my new reality. The world I had built up that felt safe was suddenly infiltrated by the horrors of a past I’d tried so diligently to forget. In a matter of days, my new normal had crashed into my all-too-familiar, vulnerable past.

I thought that fragile feeling would disappear when I left the hospital, but then I stayed the rest of the weekend at my grandparents’ home, the place where I had spent months recovering the last time my life had flipped on its head. I felt fine physically, but I was irritable and pensive. The fear of losing the life I’d built–again–created a hard wall of fear and frustration in front of my face before I could even realize it was happening. Thankfully, my family saw it first. They let my harsh comments go and explained away my frustration with every little thing. It’s amazing how much you can need a hug without realizing it.

When I drove home today, I found myself weeping over the simplest songs. I found frustration and jealousy at a friend’s Facebook event invite because she knew I couldn’t attend. Logically, I knew she was reaching out and being friendly. But emotionally, all I could think was, “Screw you and your simple life. How can you rub it in my face how completely over my life is? How can you treat me as though none of what I’m going through matters?”

It was a ridiculous reaction to a perfectly kind invitation, but I couldn’t push the feelings of anger and frustration away. It wasn’t until later, when I was talking on the phone to my mom, that the real reasons for my frustration poured out of me in a stream of tears and words.

Admitting My Frustration, Facing My Fears

When I was growing up, I was always reminded how lucky I was to have my arthritis in remission. As in, my mother constantly reminded me. At track events or cheerleading competitions, when I took the field with Dance Line or took the stage for Drama Club, my mother would gently remind me of how proud she was of my accomplishments–and how grateful she was that I could enjoy them. Because my juvenile rheumatoid arthritis had gone into remission at age 4, I didn’t quite understand what she meant. It wasn’t until living with RA these past six years that I finally understood that gratefulness.

Knowing what I know now about sitting in doctors offices, scheduling everything around prescriptions and infusions, and spending time in hospitals, I want to tell the people around me to be grateful every day. I want to scream at people to make better life decisions and to take better care of their bodies and their souls. I want to remind myself every day to take better care of myself. At the end of the day, the person I am really frustrated with is myself. And my parents. And God.

If I’m being perfectly honest, I do my best to live my life as carelessly as others my age. The minute I could afford to dye my hair again, I went bright red. The second I wasn’t on a medication that reacted negatively to alcohol, I ordered a gin and tonic. The moment it seemed like I had a new normal that didn’t involve 5 different eyedrops and 3 surgeries a year, I stayed out late and went out on dates. I lived life the way I saw other people my age living. And when I couldn’t hold as much alcohol as I could before getting sick, I blamed my medication. When I couldn’t stay out late because I got tired by midnight, I pretended I was fine. When I realized I really didn’t feel like drinking and staying out late anymore, I took up the role of Designated Driver and acted like I hadn’t changed. But I had.

I’m 25. I have RA. I get tired around 11pm. I don’t like being drunk. I prefer board games to bar-hopping. And I hate that it makes me different from my peers. I hate that my wrists hurt when I don’t eat well. I hate that getting a fever puts me into the hospital for a week. I hate that my schedule revolves first around doctor and infusion appointments before anything else. I hate that I have to make sure everything is a certain level of clean. I hate that I have to do about 5 extra things than most people before I leave the house. I hate that I have so many little things to remember that I can’t seem to remember anything anymore. I hate that I have an infection that caused me to get sick last week, but I won’t know for another week or more what it is. I hate the fear that it’s something even more life-changing that what I already know I have. I hate that none of my close friends seem to understand how vulnerable and frustrated all this makes me feel. I hate that I don’t feel like it’s fair to them to tell them how I feel. I hate… so much!

I’m so jealous of people who can get up in the morning and just walk out the door. I’m jealous of people who don’t take pills every day. I’m jealous of people who haven’t had to visit a doctor in years. I’m jealous of people who don’t live in fear of what else might go wrong. I’m terrified that something else will go wrong. Something else always seems to go wrong. There it is: my frustration, my jealousy, my FEAR. Because what it all comes down to is fear. Fear that I can’t deal with whatever else gets thrown my way. Fear that I won’t have the things I always wanted. Fear that I will be alone in enduring whatever comes next.

The Silver Lining

When I recognize these frustrations and these fears, life is just as quick to show me how incredibly fortunate I am. I live in America. I have easy access to doctors who can help. With medication, I live a relatively normal life compared to most Americans. Compared to most of the world, however, my life is charmed. I am grateful to have medications to remember each morning. I am grateful to get out of bed each day and get ready for a job that I’ve had for more than 3 years. I am grateful that this fall I will have the opportunity to study what I love. I am so grateful for the things that I have, the life that I lead, and most importantly the amazing people who make it all worth it. Like my grandmother told me yesterday, I might never have all the things that I want in life, but I will never be alone. I have my family and friends to thank for that. In a way, I have myself to thank for that. And my parents who helped me to create the person I am and the life that I have. I especially have whatever God there is to thank for that.

I was reminded by a Kutless song today that “You have to face the clouds to find the silver lining.” My family, my friends, and all of you are my silver lining. Hold people close, open up to those around you, and don’t be afraid to talk to a stranger and make a new friend. Life seems so much less frustrating when you’re surrounded by love.

God bless.