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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SuddenSight Branches Out – and needs your help!

wpid-img_20150723_122916.jpgHello readers!

As I teased earlier this week, SuddenSight will be making some changes this fall. One of those changes will be moving to a new .com platform! But no change comes without a snag or two…

The URL SuddenSight.com is already taken. Drat! So I need your help deciding on a new name. Here are a few I’ve been mulling around:

1. Sudden-Sight.com
2. SuddenSightHealth.com
3. MySuddenSight.com
4. SuddenSightBlog.com
5. ChronicHealthBlog.com

Would LOVE to get your feedback and alternative suggestions!

This fall, the blog will begin featuring guest bloggers discussing their journeys with a chronic disorder, a variety of allergy-friendly recipes, general health and wellness posts, and of course my continued personal posts.

Looking forward to taking this big step forward with you!

A New Approach

I know what you’re thinking: “Two posts in less than a week? Inconceivable!” After such a dry spell it may seem unlikely, but much like the great Vizzini, I do not think that word means what you think it means. At least in this case, two posts close together is rather conceivable. Let’s just say quite a bit has happened this week.

My last post explained how crummy I’ve been feeling in the last month. The culprit seems to be the oral prednisone I’ve been taking since my eye surgery in May. I am happy to say that after talking with my eye doctor today, I’ll be tapering off over the next month. So hopefully I should start to feel more normal soon.

Unfortunately, that was the only good news from my visit. It seems the scar tissue on my left eye has grown back. As I briefly explained last month, this surgery was a new attempt at the same game we’ve been playing for the past six years: remove the scar tissue, try to stifle the inflammation, and hope it doesn’t grow back. It seems that, yet again, we have lost this battle.

My heart sank in the doctor’s office when I felt the tug on my eyelid as I tried to look at my nose. I knew that the scar tissue on my eye had again attached to the lid, even just the tiniest bit. It was immediately devastating. My hopes had been so high, and my vision was doing so well. It was amazing to me that the doctor and nurse in the room didn’t seem to flinch.

Dr. Hamilton began to talk about the next steps we could take – scleral lenses and steroid injections into the scar tissue. How are you acting like this isn’t a huge setback? I wanted to scream.

But after six years of the same story, I guess it isn’t really much of a setback. It’s just not another way forward. Still, I could feel myself melting into the chair as I texted my parents and close friends the news.

I drove home, had a long talk with my best friend, and I cried. I felt so relieved to let the sobs burst forth in sputters against my pillow as my heart wailed against the injustices of life and mother nature. The weight was still on my shoulders, but it started feeling bearable. It can be good to just get all of that muck out of you and into the open – if only to keep it from staying locked inside.

Afterward, I spent a few hours watching episodes of the satisfyingly gory American Horror Story: Asylum, and then dove straight into my work. The day was finished off with an endorphin high from one of my favorite yoga classes.

People wonder all the time how I can stay so positive about everything. “Don’t you ever have bad days?” they ask.

Of course I have bad days. And my bad days are largely unpredictable, just like the rest of life. Even though today wasn’t particularly big news to my doctors, it crushed me. I felt as though I’d lost a major battle in the war of my life. Something about it just hit me flat across the stomach like I’d actually been punched.

But the day got better. As I went through my list of usual coping mechanisms (horror flicks, writing for work, signing Julie Andrews songs, deep breathing in yoga), the negativity and anger I’d felt in the morning slowly began to wash away. It isn’t always so easy, and sometimes the frustration takes weeks and even months to dissipate. But somehow it always seems worth it to keep moving forward.

I have been incredibly fortunate in the unwavering support of my family and friends throughout this process – which I believe is the real reason I have persevered and even thrived. They are helping me purchase the scleral lenses, which may stall scar tissue growth and ease inflammation in my eyes.

It is my sincere hope and belief that one day we’ll find the right approach to my eye troubles. Just like it took me twenty-five years to learn how to cope with stress, this is also going to take time. But I hear patience is a virtue!

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?

Where has all the anger gone?

With the vast popularity of shows like CSI or Law & Order, we’ve grown accustomed to hearing common criminal justice terms like “mandatory sentencing” or “contributory negligence.” One term has always struck me as odd: “victimless crime.” I have never been certain whether a crime could ever truly be victimless. Is the person committing the crime not harming himself? The term further begs the question: Can there be a perpetratorless crime?

There are several stages of grief that a person undergoes after losing someone dear. Likewise, there are stages a person undergoes after experiencing a trauma. Both can involve stages of anger, denial, numbness, fear, guilt… The list goes on. In my experience, I have only understood the stages after I’ve passed through them — sometimes years afterward — and their passing has never signified a decided end to the experience. Instead, the overlapping stages have become almost cyclical, and still usually only recognized after-the-fact.

Last week, I went in to see my doctor after experiencing acute eye pain, which turned out to be excessive scar tissue growth. In one month, the tissue went from being stable to threatening the vision in my one “good” eye. The disappointment was staggering, coupled with a dizzying nausea at the thought of yet another painful surgery. It will be somewhere around my 15th eye surgery since 2008, and I am none too pleased that it comes so soon after nearly a year of promising eye stability. No, this quick change for the worse has come not from my own negligence, but from insurance denial of my RA treatment’s medical necessity.

I know what most people’s first reaction would be to this: anger, denial, fear. Mostly anger, to be sure. After years of inching forward, it would only make sense that I be furious with this company for denying my much-needed treatment, thereby threatening my vision. Yet while I certainly feel some fear and anxiety, anger has long been a difficult emotion for me to conjure. Yes, a doctor prescribed the medication that started all of this; her intention was to help. Yes, this surgery is unplanned, unwanted, and greatly frustrating; I have walked this path before. Yes, the insurance company is a clear villain in this difficult scenario; the friendly representatives have not caused me personal harm.

What does one do, exactly, when there is no clear perpetrator to an egregious crime? Who deserves my fury? Where might I lodge insults and create calamity? When is it appropriate to unleash my grief?

Grief requires anger. Emotional trauma deserves reparation. And yet, no single person seems guilty. And no fury fires in my gut.

I have read quite a bit on the stages of grief and of trauma, and I find so little to be said of those who push past and move forward. Not all who move forward have also moved on. There’s so little to be said for those with no clear demon. Not all who fight have a well-defined foe. And so little has been said of those who fight inside the lines. Surely not every battle must be bloody and public.

For now, I turn to the cogs and file a complaint with the appropriate department (the insurance commissioner’s office). For now, I wait within the delineated rules and continue moving forward. For now, I ignore the dragonless void that leaves me swordless, and I hope the democratic system I love will not fail me.

Scratching the Surface

The past couple months have been a bit of a whirlwind: moving, birthday, leaving my job, and starting grad school. In the movies, the start of an adventure is much the same. The take-off is rocky, you are introduced to a whole new set of wacky, lovable characters, and then set forth on a life-altering journey! But the movies don’t typically take into account week eight of the journey, where things are harried, the main character hasn’t really adapted yet, and the destination is still eons away.

What I have entered, my wonderful readers, is the training montage.

This is where life gets particularly tricky. Sure, motivation is still somewhat high, the stakes are clear, and the goal is evident, but the path is covered in fog. Or, better yet for my personal metaphor, the lens is still covered in scratches. You see, fog dissipates.

For the past week, I’ve been experiencing a growing headache. Light was becoming a burden again. That glaring friction in my left eye was returning, searing into my pain threshold and blurring my vision. Some of my worst fears were creeping back into view as pain and light sensitivity seeped into my daily routine: Wake up. Lie face-first into my cold, dark pillow for at least half an hour. Take Tylenol. Rinse my eye, and lie there for another half hour praying away the thick pain of a migraine stabbing through my left eye. Get up for a few hours to try and get work done. Repeat.

This has been getting worse each day, and the brutal memory of years lived this way have quickly found their way into haunting my every step. Is it starting again? I think, Is the inflammation back? Is the pain back… for good?

There are so many of us who live this way. Walking to MARTA last week, my knee felt funny, and I worried the rest of the afternoon if the winter would be rough on my joints this year. What if the Remicade stops working? Even on days when life is relatively normal, those tiny worries sink their teeth into our thoughts, raising our adrenaline and heaping on the allostatic load. Cases of adrenal fatigue in patients with autoimmune disorders–really any chronic illness–must be high. For years people have cautioned me to relax, to stop worrying, to take a vacation. And yet, I find it exceedingly difficult to meditate, and taking a vacation from one’s own mind is relatively impossible.

This morning when I awoke, the pain was worse than ever. I had wasted most of yesterday curled up in bed, and the fear began to set in that everything would stay just out of my reach. First career choice? Gone. Chance at a “normal” life? Zero. And now this, grad school, my most yearned-for and inevitable-seeming life goal–would that be snatched away, too? Replaced by another round of years spent hiding from lights behind sunglasses, losing my hair to Prednisone, wasting two to four hours every day to that insatiable monster called Pain?

And then it occurred to me: Change your lens.

Severe scarring on my eyelid means that I have to wear a bandage contact lens to keep from getting corneal scratches. And much like the pain of a scratched cornea or intense inflammation, a small nick in a contact lens begins with the feeling of an eyelash lodged beneath one’s eyelid. Add the uneven surface of my own eye and the ease with which my eyes become inflamed, and that small annoyance can mimic great “discomfort.” Sure enough, as soon as I replaced my bandage lens with a new one, the pain began to evaporate.

Like changing a scratched lens, it can be helpful at times to shift one’s view from his own blurred perspective. Fear of pain, fear of loss, fear of failure, and fear of loneliness are all scratches that blur our vision from time to time. They can create lasting scars and cripple us for life, or we can upgrade our treatments and change out our lenses. Even a scratched cornea heals with time. And–as I saw recently on the streets of Atlanta–even a man entirely blind can find someone to help guide his way, tapping along the sidewalk with her own stick in sync with his and chattering away merrily.