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.

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!

A Good Day

teachingpicSo often when you have a chronic disorder, especially a painful or debilitating one, it can be difficult to talk about the good days. That seems counterintuitive, right? Shouldn’t we want to talk about the good days more than the bad?

Of course we do! Thinking of the good days is what gets us through the bad ones. And yet, so many times when I’m writing on this blog, posting on Facebook, sharing on Twitter – I find myself posting far more frequently when I’m frustrated or hurting. Certainly those are times when I need support – of course! And I have to admit that posting when I need support has made a tremendous difference in my recovery time and overall attitude. Yet I also find that posting when I’m happy – on the good days – is just as important!

So here today, just for all of you, I am posting my sheer happiness in waking up this morning on a gray winter day in Atlanta, when the silver lining seemed so shiny and bright…

Mornings

Mornings have never been particularly easy for me. As a kid, I had insomnia, and waking up during high school often meant three different alarm clocks that invariably were destroyed or slept through. But for the past nearly seven years, mornings have been near impossible.

If you haven’t yet read about Christine Miserandino’s Spoon Theory, it’s the idea that everyone wakes up each day with a certain number of spoons with which to allot varying daily tasks. Take a shower? Spoon. Go to work? Three spoons. And so forth. But we don’t all get the same number of spoons. And for some of us, a shower can cost a helluva lot more than a single spoon.

Mornings for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. I’ve undergone around 15-16 eye surgeries, some here in Atlanta and others with a fantastic SJS specialist in Miami, Dr. Tseng.

It was my first surgery with Dr. Tseng in 2011 that prompted me to start this blog. He was giving me sight back in my right eye. While compications with my rheumatoid arthritis (RA) did not allow that sight to last, his surgeries did give me something else. Through resurfacing the eyelid, he removed the constant pain from my right eye. And last week, he did the same with my left.

Surgeries are never fun. I currently have a “contour bandage lens” in my left eye to keep the stitches from scratching my cornea, and I’m on several different medications for after-surgery pain and inflammation. But when I woke up this morning, something miraculous happened…

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Words really cannot describe how incredible it was this morning to open my eyes and simply see. No pain, no fear, no fatigue from the fear of pain. Just sunlight creeping into my room, wishing me a happy morning…

And a very good morning to all of you, dear readers! Keep your warm memories snuggled near to you this winter, and the happy sunshine under your wings!

Once More Into the Breach

eyesI’m sitting in a hotel room in Miami, mere hours from the next chapter in what has become a seven-year climb. I suppose I could think of my steady stream of surgeries as a mighty war against the scar tissue that continues to threaten my vision. Tomorrow’s surgery is but one battle of many in a long siege that the guerrillas seem to keep winning. Each time the surgeons believe we’ve beaten back the insurgents, and each time the inflamed warrior rises again to conquer!

I could see this as a mighty war, but no. Instead, I choose to see these trips as tricky crags on the mountain of my life. A mountain I have no intention of quitting, no matter how Sisyphean the task may seem. And Sisyphean the task may yet be…

In May 2014, my Atlanta doctor performed a surgery on my left eye (the one with full sight) to cut back the scar tissue which connected the eye to the eyelid. He stitched a donor cornea over the surgical site, hoping it would act as a barrier to keep the scar tissue from returning to envelop eye and eyelid again. By July, however, the attempt proved to have been in vain.

The tissue has returned in full force by now, and I am seeing Dr. Scheffer Tseng in Miami to try something old, but somewhat new. This time, it is a surgery of my own suggestion – one that I am proud to say Dr. Tseng agreed would do well to calm the tissue. He technically did a similar surgery for me in 2012. Despite medication and attempts to bring back sight in my right eye, the pain of it all was excruciating. Constantly inflamed, the scarring on my eyelids from 2008’s bout of Stevens-Johnson scratched mercilessly against my eye. It was far worse for the right one than the left.

Tseng believed the scratching may well be what caused the inflammation to ruin his remarkable surgery that renewed sight in my right eye for a few months. It had gone well at first! But as has been the case with the left eye, the scar tissue pressed forth – and in the right eye conquered all. So he used cheek tissue from my mouth to resurface the inner eyelid of my right eye, stopping the friction and easing the pain. And ever since my right eye has been blind, but calm.

Tomorrow, he will repeat the surgery on my left eyelid. It is my belief that the scar tissue continues to grow in an effort to protect my eyes from the constant scratching of the scarred eyelid. I hope that removing this friction will mean that the scar tissue no longer has a need to grow. Essentially, I’m negotiating with the terrorists of my body – not unlike the Remicade infusions which calm my RA.

And so, my friends, I go again. Once more into the breach. Once more up the rocky surface, with my fingers strong and my feet steady, hoping to make it past this next incline. Let’s hope for the best!

Try, Try Again

Do you ever wake up and just think, “Not today”?

For those of us with chronic illnesses (or even difficult habits), finding a way out can seem like an impossible task. After years of trying, the trying itself can become a monstrous chore. I know I have certainly had moments where giving up looked like the best viable option. Except, I would remember, giving up means getting worse.

There’s an anxiety that undergirds every new treatment. What if it doesn’t work? How much money am I wasting? How much time am I wasting? How much time do I have left, anyway?

Today I’m going into the eye doctor to be fitted for scleral lenses. Essentially, they’re large, hard lenses with a reservoir over the cornea to keep fluid on the eye. The hope is that this will ease inflammation and keep my eyes from growing scar tissue in an effort to protect the cornea. Sounds fantastic! Frankly, I’ve been hoping to get these for a few years now, but the expense wasn’t an option until just now.

Yet there’s still that voice in the back of my head – the one that reaches down and twists my stomach into knots. What if it doesn’t work? the voice asks. What if this was all for nothing, and you go blind anyway?

It’s a ridiculous notion, really. I’m in no danger of going blind anytime soon. We have several other options before that even becomes a worry. And yet, it remains my worry.

When my anxiety is high like this, I often turn to friends to vent. A simple text message at midnight to my sister will calm me, even if she doesn’t have the chance to respond until morning. For me, it’s about getting the words out of my head and sharing them with someone who cares. Other times, I might find it helpful to talk to a friend who makes me laugh or to watch something funny. I’m proud to say I own every episode of Monty Python’s Flying Circus, and it never fails to take the edge off.

My last resource, as a left-brained “Virgo”, is to plan. I plan what I would do if I did lose my sight or my ability to move freely again. I am instantly grateful for my vivid imagination and my dreams, for regardless of my physical condition, those have remained untouched. I have always loved writing and storytelling, and that has been my solace.

When I was first rebuilding my life in 2008-09, I happened upon a film that changed my life. The Diving Bell and the Butterfly is based on the memoir of a man who has a stroke and loses everything but his ability to blink his left eye. Through months of calculated blinks, he shared a story that gave me strength in that first year.

I actually haven’t thought about his story for a long time until now. Perhaps, if the appointment this afternoon does not go well, I will come home and read his book again. I can find hope in the powerful story and gratitude for my ability to read. Then tomorrow, I can research something new to try.

Putting the Pieces Together

prednisoneWe don’t talk enough about the added effects of chronic health problems. We’ll talk about what medications help. We might mention their physical side effects. But how often do we talk about how these things affect our daily lives? It’s almost as if being alive is enough. But in some ways it really isn’t.

Being alive and living are not mutually inclusive. Doctors and even society can sometimes fail to see the difference. Even worse, they can misunderstand how certain treatments that help us be more comfortable in one way might affect our ability to function well in another way. For example, a person on chemotherapy might be able to move more easily, but they potentially do so at the cost of constantly feeling sick. Different patients need different care, something that our entire healthcare system – insurance, legislators, and even doctors – seems to have forgotten.

I was reminded today about the importance of finding the right care, and especially of finding the right doctors. I was also reminded of how hard it can be sometimes to see the bigger picture of health when we’re focused on the daily minutiae. It can be difficult to piece together the real problem when we don’t think about our bodies as a whole puzzle.

Walking into my rheumatologist‘s office this morning, I went through the list in my head of things I needed to tell Anna, his PA. Headaches. Stiff hips in yoga class. Some trouble sleeping. Nothing much seemed out of the ordinary as far as my arthritis went. I followed the nurse back to a patient room and answered the usual questions. No new symptoms. No illnesses since I was last in. No changes in my medication.

Wait, I remembered as she listed the prescriptions on file. I’m still on prednisone from my surgery in May. But the moment was lost. She’d already moved on to the next question. That’s okay, I told myself. It’s not that big a deal, and I’ll be tapering off from it next week.

The nurse left the room, and I quietly scrolled through my Twitter feed as I waited. Once Anna stepped in, we jumped quickly through the niceties as she asked about school and how my eye was doing since the surgery.

I’ve recently been lucky with doctors. I hear complaints all the time from friends about poor bedside manner and the awkward moments of patient-physician interaction. The two physicians I see most, though, are some of my favorite people. And their staff are also fantastic. The first thing my rheumatologist ever said to me was, “Girl, you’ve been through some crazy shit.” I felt comfortable there. And after three years, talking with Anna was easy. Her probing questions about my physical and emotional health felt more like a concerned friend than a discerning doctor. I spouted off the list I’d made in the waiting room. But that’s the thing about good doctors: they know what to ask and when to listen.

“Is there anything else?” She tilted her head toward me, waiting.

I hesitated. My other issues seemed unrelated, and probably just caused by stress. But I decided to tell her anyway.

In the past, I’ve had problems with obsessive-compulsive disorder. I have been treated at various points in my life, and I’ve learned to manage it on my own. Most of the time I have no trouble with it at all. But over the past month I had been noticing OCD symptoms. Anxiety, obsessive thoughts over simple conversations, negative listless thoughts throughout the day, trouble shutting down my brain to go to sleep at night. I figured it was related to stress from overworking myself at school.

But as I spoke, I started to pick up the pieces I’d laid before her and put them together. It wasn’t just that my mind whirred as I tried to sleep. There was also a listless energy that made lying still uncomfortable to the point of being almost unbearable at times.

“Prednisone,” I told her. “I’ve been on prednisone since the surgery. I didn’t think about it until just now. Those are all the same symptoms I had the last time I was on it.”

She nodded and explained those those were all symptoms she’d heard before. Even the anxious thoughts. It was funny to hear her say that, considering my previous doctors had told me trouble sleeping was the only side effect that could be connected to the medication. three years ago, I’d spent over a year begging my doctors to let me stop using prednisone. They couldn’t believe a corticosteroid would have such a strong emotional reaction in a young woman. And even if it did, they argued, the benefits outweighed the costs. I had quite disagreed.

Her words brought a smile to my face. It was like a tiny cloud lifted from around my head. For a month I’d been having headaches and feeling downright crummy. But it had a reason now – one that didn’t involve me having to reassess my lifestyle or think about adding yet another prescription to my list. She told me that a few weeks to a month after stopping the prednisone I should feel normal again.

So often we get lost among the piles of puzzle pieces that we fail to see how they fit together. Writing down your symptoms or saying them out loud to another person – even when they seem unrelated – may be exactly what’s needed to figure out what’s wrong. Or what’s missing. As I’ve said several times in this blog, I am a strong advocate for keeping a journal to catalog both your physical and emotional experiences and of trying on several doctors until you find the one that best fits your needs.

Know your self. Trust your body. Advocate for your best life.

The Numbing Wall

I suppose I should start by saying that I won my battle with the insurance company! I apologize that it has been so long since I have written. I could blame it on being in grad school. Or on this increasingly frustrating bout of writer’s block. But excuses are futile. I haven’t written because I haven’t known what to say or how to help. I’ve been busy, yes, but mostly just out of motivation.

It happens sometimes – that brick wall that shows up right when you thought things were going so smoothly. And when the only option seems to be to keep bashing headfirst into that same wall, it’s sometimes easier to just ignore that the wall exists. And that the pain exists. Sometimes the easiest option is simply to shut down from it all for a while and be numb to the whole process.

To sum up the past few months…

  1. I won my battle with the insurance company, but only just after I was told I needed eye surgery immediately.
  2. The scar tissue in my one good eye (the left one) had begun to grow into my vision.
  3. The insurance company then sent me on another wild goose chase about paying for the surgery.
  4. I managed to win that battle, too!
  5. The surgery went incredibly well, and my doctor used a new technique that will hopefully keep the scar tissue out of my sight and away from attaching to my eyelid for good.

So that’s my health right now: I’m back on my Remicade treatments, my vision is back to my version of normal (plus my left eye is detached from the eyelid!), and I’ve even been able to start back doing yoga and reading for more than a half hour at a time. Life is going well, even in the statistically average sense.

I have yet to celebrate, though. There’s certainly been several heavy weights lifted from my shoulders, but I feel very calm. It’s not even that I’m waiting for it all to fall apart again, like I usually am when good things happen. No – I’m just moving forward. Step by step. No frustration, no overwhelming joy, and still no anger. To answer my question in the last post, “Where has all the anger gone?” I have to say that it’s been replaced by the numb feeling I described earlier – the one that involves running headfirst into a brick wall repeatedly.

I’ve not talked about this feeling before with others who have autoimmune or other disorders. It’s sort of difficult to describe, really. It’s not that I don’t feel the day-to-day moments of gladness or stress. It’s just that on a scale from 1 to The Story of Us* I really only hit about a 0.5 these days. And when it seems like a 1 or a 2 might be in the cards for a certain conversation, I’ll make a joke to tone it a notch.

I wonder sometimes if anyone else ever feels (or doesn’t) this way. Is it a coping mechanism, or just normal life? Maybe for those of us who know long stretches of intense emotion the day-to-day lack of drama starts to feel like a void when in fact it is just the art of being normal. Statistically average. Except that which may seem statistically average in America is not the same for the entire world. My worries about medication for my RA seem so small compared to the daily worry for much of the world’s population about being able to have food or clean drinking water. Maybe instead I should rejoice in my ability to relish spikes of great emotion, because I live a life where I can have moments of selfishness, where narcissism is a growing problem, and where “entitlement” is a pet peeve of those who drive cars and go to the movies.

I think that perhaps we are all caught up in a cycle of moves based in survival and emotions spent too quickly. On the one hand, we see emotion as a weakness, but is it not truly a privilege? Those who cannot afford to drown in emotion are those whose thoughts must always be on survival. And yet those who act only on emotion often commit the most selfish, self-serving deeds. What is this luxurious set of impulses that separates us from other animals? How do we communicate them to each other through complex words and sentences that are truly what separate us from each other? Why does running headfirst into the brick wall of a problem start to make me feel nothing at all?

I usually like to finish my posts with a positive message of motivation. But this time, I ask instead to hear about your motivations. Not because I need compliments (please refrain from them, actually). Not because I want a pep talk. No, what I want is to hear about what motivates you. What are your coping mechanisms when things are tough? What motivates you when things are normal? Where do you turn when life stagnates?

What is your numbing wall, and how do you get past it?