Blog, Ramblings, Writing

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.

Blog, Health, Ramblings

Acupuncture Virgin – Continuing with the lifestyle changes

I’ve been flirting with the idea of acupuncture since I began with this disease and today I had my first session.

I’m not sure what I was expecting, but I wanted to give holistic medicine a chance. I’m hesitant when it comes to chemical drugs because they seem to work at masking the problem, relieving symptoms instead of fixing the problem or they create new problems and come burdened with nauseating side effects. The extreme reactions I had while on steroids (to reduce inflammation) and pain medication were awful, and I’ve gone back to sticking with Advil if the pain gets too bad; otherwise, I suck it up. (Of course, I say this now, during the summer, when I’m feeling overall better thanks to the frequent naps and resting and the lower work load – we’ll see what happens when the semester begins).

Now don’t get me wrong – we need medicine and I am taking some medicine (Plaquenil) for my condition. When we have serious problems that threaten to kill us, they help us stay alive and maintain a relatively normal lifestyle. But, we’ve gotten to the point where we forego general maintenance of our bodies and instead rely on artificial means to return some of what we lost. We learn, too late, that simple lifestyle changes can impact how much disease and medicine we’ll need later on. Some diseases are inevitable – they’re genetically ingrained in us and the triggers are too common and bountiful. But lifestyle changes, true lifestyle changes can help lessen the severity of some diseases.

I’ve noticed this with food. With all this process junk we have in the supermarkets (though I have to admit it’s delicious junk!), we’re feeding our bodies the wrong foods. It’s not optimum fuel and we’re killing ourselves with it. Reading Michael Pollan‘s books has been enlightening; he gives some clear and concise rules on what we should be eating, and really, it’s all common sense! If something has a shelf life of several years, it can’t be that good for you! And what about  the ingredients. MSG, pesticides, artificial sweeteners and artificial food colorings are toxic! I’ve noticed a direct correlation with ingesting these things and pain. I was a huge diet-soda drinker. Huge. It’s all I drank. And I haven’t touched one in almost a year. Correction – the one relapse I had, I paid for with barely being able to walk the following day. I’ve gone through my pantry and taken out all things with MSG, which left it quite bare as MSG has made its way into almost everything, from seasonings to take out food. I’ve also tried to incorporate more veggies (especially dark, colorful ones) and fruits into my diet, really focusing on anti-inflammatory foods, like pineapple, blueberries, chia seeds,  broccoli, mushrooms, celery. Even though I’m not crazy about some of these (mushrooms and celery – eh), I’m finding creative ways to consume these foods.

But I went off on a tangent. The acupuncture session today. It was good. Weird, but good. It’s funny because just entering into the room, I felt the change of energy. The soft music, the incense (which  I don’t always like, but today it felt just right), the soft colors on the walls, and the Buddha in the corner – it all came together in a peaceful manner. We started with a consultation where the doctor went through all of my medical history and asked me questions about my physical and emotional health. She gave me some feedback and suggestions, and then we started the session.

I never really liked the idea of sticking needles in my skin, but everything I read said it was painless. Not quite so. It hurt many times and I definitely felt the needles going in! There were some areas that hurt more than others, which she explained was normal. Once all the needles were in, she dimmed the lights, put on a small lamp near my feet, and left me to my thoughts and sensations. I felt a sort of tingling (which, she explained, was the energy moving through), and some I had some aching specifically around my right ear and left arm. I think she said the ear was emotions. But don’t quote me on that.

The thirty minutes were up quicker than I anticipated, and when I got up, I felt somewhat dizzy. Soon after, however, I was feeling good. Not perfect, not 100% pain-free (and my stomach was as upset as before), but I felt a little more energy which, over the last few days, had been declining again.

I can’t say it was a great experience, but it wasn’t bad, either. It was different. And I think I’ll be repeating it for a few weeks to see if I notice an improvement. I hope to also take up yoga in that center. I really liked it.

A quick side note: my husband also went and had a session. Instead of feeling more energized, however, he left feeling groggy, exhausted, dizzy.

 

Blog, Health, Ramblings

Sleep Paralysis – A (literally) rude awakening

A few months ago – I think it was towards the end of April – I had a pretty freaky experience.

It was early morning, around 6:00 AM. My husband had just kissed me good-bye on his way out to work; I was still in bed, in that half-asleep, half-awake state where all I want to do is surrender to sleep once more, but my consciousness is telling me my son is likely to wake up with the beep-beep-beep of the alarm being deactivated and reactivated.

Sometime in that in-between state, I start hearing a hish-hish-hish; I feel a presence near me and someone with a deep, male, husky voice is speaking to me, only I can’t understand what he’s saying. It sounds like parseltongue from Harry Potter! I go to move my head, and I can’t; I’m frozen in the bed, unable to move arms, legs, head or trunk, and I’m seeing but I’m not sure if my eyes are open. My chest thumps harder; I shiver and feel the prickling on my arms as the hairs rise. I try to move again, but it’s no use. Finally, I am able shake this thing off and move. I turn, sit up on the bed, and look around. I see nothing; I hear nothing. I want to go back to sleep because I’m still drowsy, but I’m too afraid what just happened. I feel lost, uncertain. What the heck just happened?!

After that “episode,” I called my husband and told him what happened. I sort of laughed about it, but the experience kept nagging at me. What had I experienced? Was there some other-world being in the house with me? Was it a spirit, a ghost? Was it a hallucination spurred on by the meds I was taking? (At this point, I was taking prednisone to help with the connective tissue thing I have going on). I didn’t google it then. I brought it up at my rheumatologist’s appointment and she wrote it down as a side-effect of the prednisone and ordered me to stop taking it.

Life went on as usual, and I didn’t experience that hallucination – or whatever you want to call it – again. I figured yep, that was the prednisone and that was that. Until yesterday morning. This time, I was in my son’s room. Again, it was in the early morning hours, but this time before my husband left for work. I was curled up, uncomfortably, at the foot of my son’s bed (he’s been having sleep/nightmare problems again – another story for another time). I remember turning over on my right side when it started happening again. I heard the hish-hish-hish sound (again – like parseltongue) but this time, a lower, childlike pitch. When I heard it, I tried to turn over, but like last time, I was frozen, stuck in that fetal position on my right. I felt the tightness in my chest, the fear swiftly covering me. There was somewhere there with us, with my son, and I couldn’t move to help either one of us, if needed. So what did I do? I started chanting, in my mind, my Our Father’s and Hail Marry’s and Glory’s I could fathom. I found it somewhat ironic that in my current state of crossroads when it comes to my religious faith, I should resort to the familiar prayers taught to me.

Like the last time, the sensation passed, and though drowsy, I was awake. I looked around my son’s room, looked up at my late-father’s crucifix over my son’s door – the same crucifix that had accompanied my father during his years in the priesthood, a present from his mother on his ordination – and heard nothing, saw nothing. My son was oblivious to anything and sleeping soundly. I returned to my room and told my husband what had happened. We both looked at each other with that “that’s weird” look, but said nothing. He left to work, and I sat in my bed, laptop on lap, and turned to Google.

I have to say what I found was interesting and had nothing to do with the spirits my mind was conjuring up. Apparently, there’s this thing called Sleep Paralysis that happens either right as one is falling asleep, or right as one is waking up. The symptoms are: inability to move limbs or trunk, a feeling of crushing or suffocating (didn’t really have this one), and sometimes, hallucinations, either auditory or visual. I definitely had the auditory ones! Here’s an article I found on About.com regarding this sleep disorder. Before the first episode, I’d never (EVER!) experienced something like this, though I did walk in my sleep when I was younger and I did (and sometimes still do) talk in my sleep.

I guess I’ll be bringing this up to my doctor, though I hope it doesn’t happen again. It’s not a very fun experience.

Has this happened to anyone else?

Blog, Health

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.

Blog, Health

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.

Blog, Health, Ramblings

Finding My Center of Balance

The new year is here, and with it, I’ve joined the gaming community. Well, “joined” is a strong word since I don’t actually do any online gaming nor am I playing hard core video games. Or maybe that’s just what’s inferred when one says “gaming community.” We simply purchased our first video game system: the Nintendo Wii and Wii Fit Plus. Our goal? Family fun games (with a three-year-old) that would also allow us to get healthy. That’s one of our resolutions/goals for this year: get healthy.

It’s been fun, actually, though already I see the beginnings of possible addictions. The first thing my son says in the morning and when we get home from school is: “Mommy, I want to play our game.” That scares me. So, we’re building it into our schedule. Just like we have nap time, play time, dinner time, etc., we’ll have game time.

I do like this game, though. The game console came with two games, Sports and Resort Sports (or is it Sports Resort…. I don’t remember), and the Wii Fit Plus came so many exercise possibilities that I haven’t missed a beat in the past seven days. I’ve moved my body more in these seven days than I have in the last few months – that’s got to be a great thing!

One of the things I like about the Wii Fit is the ability to track my own coordination and balance, in addition to weight, BMI and time spent “working out.” (It also has yoga and strength training poses that are great for beginners like me.) Every morning, I wake up and, while getting breakfast ready, I lay out the yoga mat and balance board. Every morning I turn on the console and select my little avatar. And every morning, I step on that board and do my weigh-in. After my balance (which is always slightly to the left or right, but never centered) BMI and weight are displayed (and after my Mii avatar gets socked with a sudden gut, belly rubbing and all), I am then guided towards the body tests, which supposedly test my balance and agility. Then, like in the Biggest Loser, I am given my approximate age based on how I perform on those tests. Well, the first time I took those tests, without knowing what the heck I was doing,  my “age” came back at 48 – I’m 31! Yea, that was fun. But, once I figured out what was expected, and once I warmed up, I was better. I’ve been able to lower my “age” to 27. Not bad. 🙂

Of course, what I find the most ironic is that my “center of balance” is off, literally. This I knew. I’m clumsy. I trip over my own feet. I’ve fallen down the stairs in my house, twice. I’m constantly finding bruises on my arms and legs because, well, I’m constantly hitting myself with things and bumping into tables, and chairs, and walls. So, when I stepped on that balance board, and the little machine came back and said I was off-balance and asked if I bumped myself or tripped often, I laughed. Out loud.

It’s not just my literal balance that’s off. I seem to be slightly off balance, period. I’m constantly trying to find that balance between family, career, and creativity. It’s hard. Freaking hard. And I’m still bumping myself along the way, finding new bruises just when I though I’d balance myself out.

The good news is that after day 7 of this Wii Fit thing, I’m almost dead center. The yoga poses and fun “exercises” and games have kept me going, and I’ve been losing weigh and feeling more flexible – hey, I can actually touch my toes now! In this new year, I find I’m also closer to finding that other balance. I’m trying to plan ahead, to keep myself on track, to sketch out times and assign priorities, so I can do it all. I CAN do it all…. I hope.

Blog, Health, Ramblings

Fibro-what? Oh yeah, I’m Back.

The semester is finally done! Though I’m going to miss my students, I am happy to have a break. This semester has been beyond rough for many reasons, the biggest one being my health.

Right before the semester started, I began with some joint pain. The pain progresse throughout the semester to the point where I was having trouble doing the basics, like brushing my teeth, walking. And then I had an anxiety attack. Not fun. Well, I went to see a rheumatologist mid-semester (I blogged about that before) and then I just waited – first for the results of blood work, and then for the follow up appointment so I could talk to my doctor.

(The pain, while better, hasn’t gone away and, in fact, had been getting worse this week. My hands and fingers, especially, have been aching so bad I was having trouble driving and typing. But yesterday, after all grades were in, I felt the culmination of pain: I couldn’t move because every movement was excruciating, from my arms, to my wrists/hands, to my hips, to my legs and knees. All I could do was take some Advil and lay down.)

Wednesday morning I had my follow up appointment. My blood tests came out, to use the doctor’s words: “perfect” except for Vitamin D being slightly low. This is very good as that rules out other, more serious illnesses like lupus or rheumatoid arthritis. Or, rather, it rules them out right now. She explained there is a possibility I could still have any of these diseases, but at the beginning stages where they wouldn’t register in blood tests. Great. Comforting.

She did the physical examination again, which consisted of pressing several areas around muscles and joints, which hurt – a lot. Diagnosis? I don’t have one yet. I have obvious inflammation throughout the body. She said while she won’t call it fibromyalgia just yet, I seem to be headed in that direction. The first step, for now, is to “fix” my sleeping, since that may be triggering the pain response in my nervous system. She prescribed a small dose of a muscle relaxant and some pain medication to see if it helps me. I’m to take these for the next couple of weeks and see if my sleeping improves and if my pain subsides.

I go back in two months for another follow up.

So though I still don’t know what’s going on with me, I’m a little closer to finding out. I’ve realized a few things:

1) Glucosamine seems to help me a bit, especially the knees.
2) Caffeine, even in the smallest quantity, seems to make me feel worse, so I’m taking everything decaf for now.
3) Stress makes me feel worse. The worst I felt this semester was during midterms and finals.
4) Sleep helps.

Most of this seems basic. All I can do is try little things that will help me out. I am praying this doesn’t develop into anything worse.

I also think a lot about my grandmother, who I never met. She suffered from inexplicable pains and was sent to “warmer climate” to get better – this was in Colombia in the early- to mid-1900’s. My father, too, was always in pain. I wonder if their unexplained pains are the same I have now. I guess I’ll never know because both have passed on.