Breaking My Hiatus

I’m baaaaaack.

The semester is over. Revisions are done. And I’m officially on summer vacation.

ecstaticGIF

It might take me a little bit to unwind because, let’s face it. There’s so much truth to this picture:

Owl Teachers

The end of the semester came with its usual flare-up–though it was a bit harsher than the last one–so I’ve been focusing on healing, resting, and getting better. It was bitter, coming on the heels of a great month and a half (Jan-Feb) where I thought for sure I was in remission. I suppose it’s always harder that way, isn’t it? When you’ve had a taste of “normal” only to then be whacked by the pain and exhaustion. But onward. The rest is helping and I’m feeling better, limping less, sleeping more. And writing more, which absolutely, positively helps me improve. Thank God for this blessing!

I’m looking forward to being back, to resuming my Motivational Monday series and bringing in some new projects here on the blog.

Happy writing, everyone!

 

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Pushing through

There are two quotes that have been my rock recently:

“Nobody said that it would be easy, they just promised it would be worth it.”–Harvey MacKay

“I can do all things through He who gives me strength.”– Philippians 4:13

I haven’t blogged much recently about my journey in navigating UCTD (undifferentiated connective tissue disorder) and fibro. I’ve focused the little blogging time to writing because it’s what makes me happy, what helps me feel whole. And the truth is, I thought this summer would be golden. I wasn’t teaching, I was on a new med, and I would get to write more. I was going to kick this UCTD flare in the rear.

But I didn’t. And I couldn’t.

I got a good month and a half of feeling “well,” where it seemed the medicine was working and where relief was promised. Then I got another month of feeling “well enough” before the tiredness and migraines and pain started again. On top of that, I was getting itchy. Barely two weeks into the new semester, I was about to claw my skin off from the itching, I was exhausted, struggling to work through the days and stay on task. My weekends left me recuperating enough to tackle the next work week. When I finally got a hold of my doctor, I was told it was the Arava, the new medicine, which sometimes causes itching. Thankfully, though, it’s just an allergic reaction and not my liver shutting down. I stopped taking it, but the thing with Arava is it’s a slow-working drug, so you don’t start seeing the results until about 4-6 weeks after you start taking it and when you stop, it can take a couple of weeks for it to get out of your system completely.

I’ve been off Arava for two weeks, and this past one I’ve been feeling myself spiraling back down towards that dark place that exists lodged in the middle of a flare-up. My joints, which I realize now had only mildly and inconsistently ached over the summer, are sore and tender. My hip, shoulders and fingers, especially, are hurting. The morning stiffness in my feet, ankles, and legs is back–and this is something I’d seen an improvement in. I’m exhausted, struggling to keep myself awake driving back home. And the itching is still driving me crazy.

And for a few moments this week, I wanted to tuck myself in a corner and cry. Because I thought it was getting better. Because I finally felt in control of this thing that is an autoimmune disorder and I didn’t want to go back. Because I hate drugs and their side effects that help one thing but screw up another one. Because in my mind, this isn’t how I’m supposed to feel at 33-almost-34. Because this isn’t how things were supposed to work out.

Because I feel broken and discouraged and I hate it.

But I also hate feeling down and staying down. I refuse to let this disease have the upper hand. I have my family, my writing, and my friends, who support me and help me. I remind myself flares are cyclical. The brief moments of feeling better were great, and they will be back. Somehow, at some point. I find strength in my faith and in my family and in my writing.

Then yesterday, I came across this blog post by author Sarah M. Eden and I was inspired and awed and moved by her journey through RA. I felt as if she were speaking to me directly when she said, “I can’t change this, but neither can I simply plop down on the roadside and weep for the rest of my life.” It’s something I know, something I refuse to do, but it’s also something that, when in the midst of a flare, is hard to remember.

“Sometimes the road we are asked to walk in life is harder than we anticipated. In fact, I think it often is. And, yet, it is our road and our journey. There are times when we can stop and see the beauty around us. But there are moments when the simple act of taking a single step requires every ounce of strength and endurance and energy we have,” she writes, and I couldn’t help thinking, YES, this is so true. I know exactly what she means by this. There are times when it takes every effort just to get out of bed.

Her post reminded me of the quote above (“Nobody said it would be easy, they just promised it would be worth it), and indirectly, to writing and getting published. It also reminded me that this life, however broken and imperfect, is mine to make the most of it. And make the most I will.

An unlikely anniversary or, how writing’s kept me going

Two years ago, I was in the midst of health hell. I was hurting and exhausted, barely able to move my joints or complete simple tasks, like brushing my teeth, without experiencing pain. I felt like my world was crashing around me and I couldn’t hold up the pieces long enough to figure out what was wrong. My primary care physician (and friends) kept saying it was normal, that it  came with turning 30, that I was over-stressed. But it didn’t make sense. It didn’t feel normal.

I was overwhelmed and scared–my body wasn’t letting me function. Google didn’t help.

And then I made the decision to see a rheumatologist for some answers–best decision I ever made in regards to my health. My first appointment was on November 12, 2012. I remember sitting in the waiting room, aching and apprehensive because I didn’t know if she was going to take me seriously or not. I remember when she walked in and listened to me, really listened, and then said, “We’re going to figure out what’s going on.” It’s as if by just saying that, she validated what I knew in my heart. I wasn’t a hypochondriac or imagining things. She had her suspicions, but she was meticulous. I had vial after vial of blood taken, I made appointments with specialists. I saw so many -ologists in those following months I lost count.

And I wrote along the way. Many of my blog posts during that time can be found here. I wrote poems, blogs, and essays. I poured out my fear and frustration into words. It’s been one of the darkest moments of my life, and perhaps it’s because it came on the heels of my dad’s death. On the good days, I could breathe, get through the day. On the worst days, I felt like the sky was falling on my shoulders, crushing me against the floor. I felt as if I were failing at everything in my personal and professional worlds.

I was lucky. I only had to wait a couple of months for the first diagnosis–fibromyalgia–and another couple for the second–undifferentiated connective tissue disease. On support boards online, the overwhelming majority of stories showed how long many can stay caught in that black net of not-knowing. With a diagnosis comes a plan of attack, and hope. Medicines, lifestyle changes, education.

Knowing was half-the battle.

One of the hardest parts (the hardest, by far, was figuring out what the hell was wrong with me) of this journey, though, came next: changing my habits. It’s not easy, and I still don’t have a complete hang of it. It’s hard to go against decades of upbringing. But slowly, I started eating healthier, listening to my body, learning to say “No.” I went from trying to do it all to knowing when I had to stop. This part was filled with hope and grief. There was reaction to medications and readjustments, trying to find the right combination of medicine and lifestyle change that was right for me. There were many tears. And there was much, much writing.

I always knew writing was a release for me, but I didn’t realize just how much I needed writing to get me through this dark time. It wasn’t a matter of just recording how I was feeling, though that was a big part of it. But it resulted in creation and that process, it turns out, is just what my body needed to heal. In creating words and worlds and characters, in exploring this story, I get release. Stress drops, my body relaxes. I rest and regenerate and heal.

Writing is healing on so many levels.

Now, two years later as I write this, I’m in the middle of a flare. It’s part of this journey. I get it now. Flares are cyclical and will recur during periods of high-stress. In my line of work, I know when I can expect them, so I make amends in my schedule to manage them. But the flares are less intense. The medicines work and for the most part, I am so, so much better.

And I’ll keep writing. Not just because I love it or because I have a story to tell or because it’s a part of me. Those are certainly all reasons why I write. But high above those reasons, is the undeniable fact that I write because it heals me.

Bye, Bye, Gallbladder

I had surgery on Monday to have my gallbladder removed. I’d been having “issues” with it for quite some time, and this past December, I found out why: it was functioning abnormally. It wasn’t the one, large stone I had in it. It just wasn’t working. And I was paying for it mostly with pain and nausea. No matter how bland I ate, the pain and nausea were constant. Every day. For hours sometimes. It wasn’t fun.

I scheduled the surgery for May 14 since I didn’t want to take time during a regular semester. Turns out, my uncle also had surgery the same day, to repair a hernia. So Monday became a family event. My mom was a bundle of nerves, repeating the same story over and over again. I wasn’t too nervous. Ironically, the thing that had me the most nervous was the idea of having a foley catheter put in. Forget surgery. Forget removal of an organ. Forget the anesthesia. Nope. It was the foley catheter. The nurse laughed when I asked about it, but thankfully, it wasn’t necessary. For some reason, that really freaks me out.

The last time (and the only time) I’ve had surgery, was when I was 9. My appendix ruptured and I had to have emergency surgery, twice. I don’t remember much about that surgery, only that I had recently been to the beach and gotten burned so much that, during recovery, my skin peeled off. And I remember I had my favorite PJ, a teal-and-white colored gown with some ruffles on the bottom and a pink bow towards the top. I think it made me feel like a princess; that’s why I liked it. I don’t remember the pre-op or post-op. Just my peeling skin and my princess PJ.

Since then, I’d only had an endoscopy once, ten years ago, and that was outpatient. No big deal.

This time, I was more aware of what was going on. I wasn’t nervous; I just wanted to be knocked out already and get it over with. It was done laprasopically, with a robot, and I really only have one incision (in the belly button) and another tiny puncture. They glue it now so there are no stitches or bandages.

I had to wait, though. Initially, I was scheduled for 8:30 AM. Then it got moved to 1, then 1:30 by the preceding Friday. I got to the hospital on time, got into the pre-op area on time, only to be told, once I was ready with my IVs and all, that we’d have to wait yet another hour. I read to pass the time (I started reading Amanda Hocking’s Trylle trilogy), while my husband sat next to me and my mother tended to my uncle. Crazy day.

I don’t remember much after they said we were ready. I think I was dreaming. It was a dark, still sleep but I think I was still dreaming, though of what I can’t be sure because right when I realized I was dreaming, I came to, with the realization that a tube was being removed from my mouth. And I started having a panic attack. Panic/anxiety attacks are bad enough when you’re awake: the heat, pressure, the lack of air, the unrelenting beating of the heart against the chest. It’s like drowning and trying to break the surface, to get air, to breathe, to live. Imagine that, but still sedated, unable to move, arms and eyes unresponsive. Aware of what’s going on (like I have a tube shoved down my throat) but unable to react. It was horrible. In retrospect, it looks like the anesthesia wore off too soon, something I’m going to have to remember for any future surgeries (though, God willing, I won’t have any more).

Recovery in the post-op room was slow and painful. I felt neglected, in and out of consciousness, and vaguely aware of the gnawing pain in my throat (from the tube) and in my belly. I couldn’t speak to ask for medicine, and for a while, I was alone, the nurse attending other patients. I remember shadows and shards of those three hours.

But recovery since has been going well. I stayed overnight in the hospital. I kept liquids and food down, didn’t throw up, and began walking fairly quickly. I was released the next morning with a prescription for Percocet that wasn’t working for me. I’m weird like that. Drugs that work for others have absolutely no effect on me. The pain would get worse, actually. It’s frustrating, especially when I’d tell the nurses and they didn’t believe me, like I was just looking for stronger painkillers, looking for an addiction. Even when I stressed that I didn’t need something stronger, I needed a different type of medicine, they didn’t believe me. So I came home and took ibuprofen, 800 mg, and it’s been working.

Though I don’t like having surgery, there are a few perks that come with it:

1) no more pain and nausea and frustrations with eating

2) I’ve lost 5 pounds since the surgery

3) I can rest, and I spend most of the day in peace and quiet while my son’s at school. Hours of time just for me, to rest, read, catch up on Glee, grade and, most importantly, write.

But seriously, I hope to never have to do this again.

Random Monday

1. I received Veronica Roth’s book Insurgent wirelessly into my phone on May 1st. I was going to wait, really, I was, but I couldn’t. I started reading at 5ish in the morning and, by the evening, I had finished the book. I had read the first book in her trilogy, Divergent, last year and was hooked on her story. It is similar to The Hunger Games in several ways, but, as much as I hate to admit it because I loved The Hunger GamesDivergent was better I think. So when I received Insurgent, I was hooked. Much of what I liked in the first book was there (the characters, the plot line, the world, the factions, and of course, the love story), but there was more action, the characters were developed further, and secrets were revealed. Now I have to wait until she finishes book 3, which I think is rumored to come out some time at the end of next year. *gasp* I have to wait a whole year! I’ve never gotten hooked on a book so early on. The HP series was almost all out when I started reading them, and The Hunger Games trilogy was also all out when I first read book 1. This will be very interesting indeed.

2. I submitted my writing sample and application for the Novel Writing IV course at UCLA Writer’s Extension Program with Lynn Hightower. I am super excited and psyched about taking that class as I’m hoping it will get me closer to my end goal: completing a polished draft of my novel by the end of the summer. Now I wait (have I mentioned how much I dislike waiting…?) and cross my fingers. I should hear back some time around June 14 whether or not I got in.

3. I also submitted the first chapter of my novel for a manuscript consultation at the SCBWI Florida Summer Workshop 2012 this June. I’m scheduled for the Novel workshops and have requested a manuscript consultation. I’m hoping to take away as much, if not more, as I did this past January at the Miami Conference. I’m nervous and excited about this. I’ve had manuscript consultations before (twice on my memoir and twice with great feedback), but this will be the first YA manuscript consultation.

4. I’m listening to an audio book: Sarah Dessen’s Along for the Ride, a contemporary YA novel. I know audio books aren’t knew, but it’s the first time I’ve ever listened to one! It was weird at first. I didn’t like listening to the book. But after a while, I got into it. I’m in chapter 5, I think. I’ve downloaded it to my iPhone so I can take it with me to waiting rooms and such.

5. Next Monday, I’m having my gallbladder removed. I’m a little nervous but more anxious to start feeling better. I’m tired of the nausea and pain and the inability to freaking eat. It’s gotten to the point where even the bland stuff I don’t tolerate. So while I’m not keen on losing yet another body part (lost my appendix when I was 9), I am looking forward to feeling better. It should be a quick and easy surgery and I hear the recovery time is minimal (barring any complications, of course). I’m also looking forward to some R&R and being pampered.

Patchwork

The problem with illness is that it can threaten to demoralize you, picking you apart at the seams, unravelling you until all that’s left is a ghost of who you once were.

At least that’s how, on the worst days, I feel. Like now. Like yesterday. When every part of me hurts and when I feel no one understands, not even my husband, because it hurts and all I want to do is stop and rest and crawl into a corner, away from everyone, and cry. And stop hurting.

It’s not just the pain that’s debilitating. There’s a stronger emotional and psychological repercussion at play, and anyone who’s experienced chronic pain, fatigue or illness will probably agree with this. At its worst, I feel like a failure. I can’t go to my son’s PTA meetings or run around with my son (I’m a horrible mother). I can’t go to work or head a student club (I’m no good as a teacher, colleague, worker). I can’t write (I’m never going to be considered a serious writer). I can’t… well, you get the picture. Consciously, I KNOW this is bullshit. It’s but a moment in time. It will get better; I will do those things, even if a little slower. But there’s a moment when I’m deep in despair and pain that I almost feel as if this illness is taking over. It’s all I can do to articulate that I can’t do this, that I’m drowning because of all the responsibilities which, though normal, seem great when everything hurts and it’s all I can do to get out of bed. And I collapse into a heap of tears and frustration and anger. And I sleep, restless. It’s a vicious cycle of pain and guilt and frustration.

The cycle breaks, though. It takes lots of deep breathing and crying and self-talking and sometimes meds to get back into a place that, though not as hopeful or optimistic as when I’m in remission, is enough that I can think of the cycle of the disease, that if I’m in a flare, with time (though how much time is never a given) I will go back to feeling better. That it’s possible to feel better again.

It’s that thread of silver that starts getting me back together, stitching me up slowly so that I can feel almost whole again.

Rough Start

At the risk of sounding like a whining child, this sucks. This feeling of being crippled by pain because of stress or because of an emotional upset. I mean, really, am I supposed to live, from now on, completely void of stress and anger? I don’t think that’s possible.

The start of the term has brought with it that familiar deep throbbing in my bones and joints, and I’m only three days into the term.

Consciously, I know there might be a number of factors at work here. It’s the first week back, which is always the toughest as my body and mind transition from a period of rest to a period of constant activity. Then, there was that dispute I had with my son’s teacher, which thoroughly pissed me off and left me steaming since Wednesday. And of course, there’s t nervousness that comes with first days of class; though I’m not plagued with nightmares like I was when I started teaching, my heart still quickens, my palms still sweat, and I swear my voice still shakes a teeny tiny bit. In the back of my mind, I also consider the fact I’m not on the corticosteroid anymore, leaving me easy prey to the fibromyalgia and UCTD.

Regardless, I know this pain all too well. And it sucks.

But it’s curious; something I find myself thinking now is that I don’t want to give in. I liked feeling well enough this past term (after, of course, the first week passed). And dammit I’m going to feel well. I’m hoping once this next week is over, my body will begin to ease out of the pain. Without the corticosteroid. With rest. I can’t do it without rest, that’s for sure, but I think (I hope?) I can do it without more drugs.

Last year ended really well; I guess I was hoping to start 2012 the same way: feeling well.

Coming off the steroids!

At my last rheumatologist appointment, I received some good news: I can start weaning off the methylprednisolone (which is a corticosteroid to help battle the inflammation and, as a result, ease the pain). It’s meant to be for temporary use, but I’ve been on it for almost the entire semester, much longer than I’d hoped. I’ve been lucky that it’s worked really well for me, and that the worst side effect is on the annoying side: stubborn weight gain. Like many drugs, I can’t stop it suddenly or it can trigger some pretty adverse reactions, including, apparently, a fatal one (especially if taken for a long time, and apparently, four months is considered a long time). So wean I shall.

I’m a little nervous, too, because I’m terrified of withdrawal side effects similar to those I had earlier this year, when I stopped taking the Tramadol. It was awful and I have no desire to go through that again. I’m hoping the tapering works with minimal effects, and soon, I’ll have one less drug I have to take.

I counted the other day. Between prescribed medicines and vitamins and supplements, I’m taking fifteen pills/gummies per day from the following: methylprednisolone, Plaquenil, neurontin, Vimovo, omeprazole, vitamin D, omega-3, Juice Blends Vineyard blend, Culturelle and papaya enzymes. No wonder I have some bad gastritis! I also find it ironic that I have to take medicines to combat side effects from other medicines.

So in about a month, I’ll be down one and I’m hoping to be able to get off a few more by the summer. I hate (really, really hate) taking so may things. But I think I hate the pain even more.

Since I’ve been more stable, I’ve had less pain, more energy, and I’ve been able to not only survive this term, but actually enjoy it. I almost feel normal. I was able to take a class and write 11,500 words of new material for my book. I was able to teach and grade and work on committees (though yes, more limited than in previous terms). I was able to have fun with my family. Now towards the end, some pain is creeping in, telling me, I’m sure, that I need to rest. Slow down. Or, like my doctor reminded me this past Monday, reduce stress. No stress. Stress is bad. Very bad.

The semester ends on a good, hopeful note. I hope it stays that way!

Fall, Back?

The weather in South Florida is finally starting to cool off. The stagnant heat of the summer has gone, and in its place is a cool breeze to offset the warm day, beautiful clear skies, and lower humidity. It’s awesome (though it would be even more awesome if the temperature dropped just a bit more. Our highs are still between 75 and 85 degrees.

But what I really love is that the cooler temperatures mean the start of the holiday season.  We start decorating with fall in mind since September. We bring out pumpkins, scarecrows, cinnamon sticks and our home is decked out in harvest decor. For Halloween, we stick to the “cutesy” decorations– having a four-year-old really makes me want to stay away from any gore and brains and zombies. While I might love my vampires, I don’t plan on exposing my son to these just yet. And I certainly don’t want nightmares and interrupted sleep (from him).

We had the time change two weekends ago, right after Halloween, and while I normally grumble about dusk coming earlier, I’ve actually been enjoying starting the day a bit earlier. It means we’ve been on time to school and work! My son is going to bed slightly earlier, and I’ve had some more quiet time at night. And in the mornings, we’re up by 6:30, which gives us enough time to handle the morning tasks without falling behind.

This semester has gone by faster than previous ones. It’s bittersweet because I have some great students, and I’m going to miss the classroom interactions after the term is over. I always hope students keep in touch because something that makes me love my job as a teacher is seeing them move on, seeing them graduate, get jobs–succeed. It makes me proud.

I’ve also been, in some ways, more stable (health-wise). I think I’ve learned to listen (for the most part) to my body and I rest when I need to. The medicines and extra vitamins have helped, too, and so I’ve been able to get part of my life back. But my body keeps me in check. Just when I start getting too comfortable with a certain routine, it reminds me I need to take it easy. This has been a day-by-day process, but I’m relieved I am feeling better than I was this time last year. The only hiccup now is that I have gallstones (eeek!), which explains some stomach-related issues, so now I wait for my follow-up with the gastroenterologist. Gotta keep things interesting, right?

On the writing front, I’ve been on an adrenaline rush because I’m ecstatic that I’ve been able to keep up. I had my doubts, what with the stress of the semester, but I’m almost done for this term! And I’m going places with my project that I had only hoped. It’s really let me appreciate the creative process when it comes to longer projects. My characters surprise me each day, and the satisfaction I feel when I finish writing the scenes, even if they’re not perfect or I might not keep them, is overwhelming. I am making progress. It’s taking shape. I understand why this process is likened to giving birth: because after you’re done, you feel like you’ve created life, with blood, sweat and tears (clichés, anyone?). You are given the role of creator, and once you’ve created, you follow your characters as their story becomes clear through writing and rewriting. It’s beautiful. And painful. And frustrating (especially when you go from the euphoria of a particularly smooth scene to the agony of trying to write during a block).

I wouldn’t change this for the world.