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.

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.

Happy Birthday, Papi

Today is my father’s birthday. Or, rather, it would’ve been if he were still alive. He’d be turning 82.

Next month, on Valentine’s day, will be the fourth anniversary of his passing. Four years. My son’s age–he was six months when my father left this world of conflict and pain and frustration.

My father wasn’t one to celebrate birthdays. He never really saw the need. In fact, one of his favorite anecdotes, about birthdays, went something like this: “When I was growing up, I never had parties or anything of the like. No. It was simple. I needed pants, so for my birthday, I got pants.” I wish I could remember the exact way his words that left his mouth, but now the memory melts into the idea of what he said: no parties, just pants.

That never stopped me, though. I do like parties and celebrating–always have. So on his birthday, I would either make him a card or I would spend hours perusing the greeting card sections at Hallmark (or Publix or Eckerds, now CVS), and then I would pen what I thought was a beautifully written sentiment. And it usually was, except it was in Spanish, and my Spanish, though good, wasn’t perfect. When I gave him the card on his birthday, then, I grew accustomed to him reading it, pen in hand, correcting my grammar in the greeting card. I have to say, though, it stung a little, and sometimes, I would fight the tears that threatened to overcome my eyes. It was a card, damnit! I’d think. Just a card. I wanted him to read past the errors (which weren’t that many!) and get to what I wanted him to know: that despite the differences and hardships and fights, I still loved him.

But love, for my dad, was different. I realize that now.

For gifts, oh that was difficult. What do you get a man who doesn’t want anything? The only thing he wanted were cigarettes–Winston ones in the red and white box. Some birthdays, that’s what he’d get. He’d already made it clear he wasn’t going to stop smoking. Not after he went months without smoking, after his leg was amputated (is it weird that I can’t remember which one right now?) and he was in temporary hospice. Not after all his doctors kept regañandolo because he was slowly killing himself. No, he wasn’t going to stop smoking. He was a man of stories, anecdotes to make his point. So for this he’d remind us that when his mother, my grandmother, was dying of breast cancer, and all she wanted was a cigarette, he fought everyone to give her one last “gusto”– “She was dying anyway; who are we to deny the dying?” That was his motto, I guess, and since, in his mind he was dying (though his “dying” lasted well over a decade), he felt we should heed his argument without question. So on his birthdays, we would sometimes relent and wrap up a box of Winston cigarettes in bright birthday wrapping paper, place a big bow on it, and present it as his birthday present. Those were his happier birthdays, I think, and in his later years would elicit a series of chuckles as he put on his shirt, grabbed one of the cigarettes and his lighter, and rolled outside of the apartment to smoke his birthday gift.

I think of him often. Not only as a daughter thinking about her dad, but as a kindred spirit who is just beginning to understand the workings of that man. I didn’t understand while he was living; I didn’t understand when, as a teenager, I saw him break things and scream and make my mom cry. I didn’t understand his pain and in not understanding, I couldn’t help him. My mom, I think, understood him. I am only just beginning to understand as I tread through my own journey of illness. And I wish so many times he were still alive and I could ask him questions. I miss him.

So happy birthday, Papi. We love you.

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!

Hello, Insomnia – some musings

It’s 3:15 AM. I should be asleep because I know the consequences of not getting a full night’s rest are brutal. But I’m not; sleep has apparently evaded me. After the initial wake-up from my son’s cries (from either nightmares or night terrors – I don’t know), I just lay in bed, twisting and trying to regain some remnant of a comfortable position with which to greet sleep. Nada. Too hot. Too many thoughts. Another cry from my son.

I gave up and came here, to write. What else do you do at 3 in the morning when the world around you is dead in slumber?

Insomnia. One of the many characteristics of growing old, my condition, and stress. Take your pick.

The start of school has been, indeed, rough. The short period of rest which summer afforded me is now a rapidly disintegrating memory. It’s only been two weeks and already I’ve neared an anxiety attack. The insomnia has also returned, and the pain/inflammation has increased. I’m back on steroids, in a second attempt at relief. My acupuncturist added new needle locations and new natural Chinese herbs.

I’m at a catch-22, my rheumatologist tells me. She has meds that can help with the symptoms. But those meds, like I’ve written before, are not without serious side effects and monitoring. It’s easy to say no to them when the pain is not intense, when it’s a simple whisper as opposed to a piercing scream. Now I waver. Maybe I should give those meds a try.

Today (or rather yesterday since, technically, 3 AM belongs in a new day) was a long day. Grueling not so much because of the amount of work but because it was void of rest. Dropped off my son. Drove through white, forceful rain. Had meetings. Taught classes. Worked on schedules. Squeezed lunch in there somewhere. Drove to meet my husband and son at a dealership. Spent four hours at said dealership. At dinner too late. I know it doesn’t sound bad. Yes, other people have worse days or more hectic days. But here’s the thing: my body cannot tolerate this. It just doesn’t respond. By the time I was driving home, I was near tears from the pain – a gnawing, incessant burning deep inside my bones and a throbbing in my joints.

When we got home, my husband said to me: we’re getting old. I’m exhausted, too, and my back hurts.

And I wanted to scream. Because this isn’t just me getting old. This isn’t just exhaustion. This isn’t just stress (though without a doubt, stress is an integral player in the triggering of a flare-up). My body’s broken. And no one who isn’t going through the same can really understand.

This is one of the frustrating parts of the disease. The loneliness that comes from feeling like a whining child. The shame that comes with feelings of ineptitude because you have to explain why you’re walking slow, or why you’re stuttering or having difficulty in forming coherent speech, or why you’re taking the elevator instead of the stairs (and hearing people’s thoughts screaming: lazy), or why you’re now trying to lessen your workload in order to manage balance and lessen pain (and again, people look at you, see someone young and “healthy” and think: lazy).

I know I’m at a low right now. I know this is cyclical. It will pass and relief will come again, however brief. I have to maintain my focus on that and hang on for this ride. And I need to write.

Because writing saves me.

It’s all in the meds

Medicines these days really seem to help one thing and screw up something else.

At my latest appointment with my rheumatologist, she suggested starting me on a new drug, Imuran (also known as azathioprine). I’m already on Plaquenil, which, with long-term use can cause blindness (great, right?), and this would be in addition to the Plaq. I’ve heard of it before (from my peaking in at Lupus support forums online) and knew it was some sort of immunosuppressant, which made sense. If my immune system is attacking itself (as it does in autoimmune disorders), then suppressing it will alleviate symptoms and make the disorder go away, even if temporarily.

I left the office feeling somewhat optimistic at the possibility of relief in sight. Though I’ve been feeling better since the summer begin, more so because, if I’m having a bad day, I can rest and nap, something I can’t do during a regular semester, I still have my bad days. This morning, for example, the pain in my hands and wrists woke me up early, and all day I’ve had the “inflammation pain” (as I like to call it) – that feeling your skin is about to burst because it has expanded so much and there’s no more elasticity left. More than uncomfortable, it hurts.

I was ready to fill the prescription for the Imuran along with my refill for the Plaq, when my husband suggested I research it before; that way, I don’t pay for a prescription I won’t use. Common sense, right? These days, I sometimes feel I lack that. I googled Imuran and this is what I got: the first article from a government website, saying this drug caused a rare and highly aggressive form of cancer. Really? Yes, the pain sucks. Yes, I want relief. But no, I don’t think I want to risk having a life-threatening disease to eliminate some non-life-threatening (though yes, sometimes debilitating) pain and inflammation. I just can’t make that decision.

Of course, I called my doctor up and told her I’d like to wait on that drug. See what happens. Tomorrow, I’m calling an acupuncturist. I don’t know why I’ve taken so long to call her. Tomorrow, though, I’m calling. And maybe I’ll enroll in some deep meditation/yoga classes. Or maybe I’ll just do yoga at home. I don’t know. There has to be something else, some other alternative to chemicals that help one thing and screw something else up!

I’m not knocking all medicine. I know some of it is needed. But I also know that lifestyle changes can go a long way. Maybe not a cure-all, but certainly a help, somewhere, somehow. I’ve started some of those lifestyle changes (mostly dietary changes); I’m eating better now (for about 6 months) than I’ve ever eaten before – though of course, I’m not perfect. I slip up every now and then, only to sorely regret it, literally. Hopefully, more changes will help, and I can avoid any other drugs, period.

Invisible Illnesses

The semester is finally over. Grades are in, and as I sit here, reveling in the resounding quiet that comes after the chaotic finish, I can hear the whispered chants of: freedom, freedom, freedom! It feels good.

This semester’s end is punctuated, though, with a follow up with my rheumatologist. It’s been a harrowing academic year, though more because of my health than because of any academic impositions. Back in March, my diagnosis expanded to include undifferentiated connective tissue disease (UCTD) in addition to the fibromyalgia. What does that mean? For those that don’t know what UCTD is (or who might resist the urge to go off into space at the “undifferentiated”), UCTD is an auto-immune condition that is lupus-like. It’s not lupus, and it might never get there, but it could. It basically means that right now, between symptoms and labs, there is enough to know there’s “something auto-immune” going on, but not enough to really be able to classify it into one disease.

I’ve taken to the web-waves to find more information. I’ve visited (and joined) online forums, filled with questions that I forget to ask when I’m at my doctor’s office. I’ve heard these auto-immune diseases labeled as “invisible” illnesses and I found that so fitting. They’re invisible because we don’t generally have any outward showings of any illness. Sometimes we might limp, or we’ll look tired, but from the outside, there’s not much seemingly different than those who’ve just had some bad nights of sleep. And people who don’t know we have an illness might label us as lazy because we don’t take the stairs or carry boxes or say “no” to late night gatherings.

But inwardly – oh my. The pain. That’s the worst. Sometimes it’s a burning deep in the bones or muscles, like lava has temporarily taken over my extremities. Or, like I like to call it: growing pains on steroids. Other times it’s a throbbing in the joints, my fingers, my toes, my knees, my hips, my elbows. Sometimes it hurts when I breathe in, and other times my head starts pounding in an attempt at a migraine. Every day, I hurt. Sometimes less, sometimes more, but every day.  And my memory – it’s mush often. Part of the fibromyalgia is the “fibro fog.” It sucks. I’ll forget simple things, like words, or something that happened recently. I have to write down everything now because there’s a very good chance I will forget by the time I need to remember.

I’ve had to make some decisions, prioritize, so I don’t stress myself and trigger an anxiety attack, and more pain. Writing has had to fall a few places down on that list, during the regular terms, so that I can be an effective mom, wife, daughter, and teacher. I have to make peace with that. During the main semesters I will have to resign myself to a few scribbled notes, a few Facebook poetics, and an overabundance of mental notes that, ironically, I might forget. But now that summer starts, oh, now I will  redeem myself.

I have my moments when I want to cry. Usually, it’s when the pain is the worst (and these last 4-5 weeks have been on a particularly bad, active “flare-up” of symptoms). Or when the medication I’m prescribed back-fires with the side-effects (apparently, I’m extra sensitive to medication) and withdrawal-like symptoms (I never have and will NEVER EVER do drugs – knowing that what I felt for four days and nights is similar to what those on addictive drugs can feel during a detox is enough for me to say this, with certainty.) Or when I want so badly to run with my son, kick the ball, enjoy a sunny afternoon in the park, but I can’t because I’m exhausted, fatigued, in pain, or simply because I have to avoid the sun (the sun triggers inflammation, and since UCTD is an inflammatory disease, the sun will trigger flare-ups). I grieve my health then. At thirty-one, I feel ancient. And it sucks. These are my moments for grieving because I am grieving the loss of my health.

But more often, I am optimistic. One of the “silver linings” is that this invisible illness is not life-threatening, especially with the proper medication that helps halt the progression of this disease (thankfully, this medication, Plaquenil, I’ve been able to tolerate well, and the side-effects are relatively few). I am forced to slow down, and enjoy the time I have with my family more. It fuels my creativity. It makes me want to reach out to those that have similar diseases, these so called invisible diseases, because alone, it’s hard to make sense of it all.

There’s more that I want to say, but right now, my mind went blank – darn that fibro fog! Look for me more often, because I will be here. 🙂 And don’t feel sorry for me. I may complain and vent and grieve at times, but I don’t feel sorry for myself. Behind each cross we carry, there’s a blessing. And I certainly count my blessings.