Thursday, June 25, 2015

Just call me Pollyanna: Coping with my still-mysterious ailment

After a month’s wait, I finally saw the rheumatologist about my broken body over two weeks ago. I knew I wasn’t going to miraculously walk away with answers, and I didn’t, but by the next day, test results showed high levels of strep bacteria in my bloodstream. In hindsight, that was most likely what I had that weekend in Dallas when I powered through my sickness to enjoy my first weekend away from my family only to succumb to mysterious and debilitating joint pains the following week.

The doctor prescribed antibiotics to rid the body of the bacteria that he suspected caused what he diagnosed as Reactive Arthritis, and I was put on a higher dosage of pain meds, which, at that point, I gratefully accepted.

OK...I guess that’s better news than something chronic and untreatable, but he wasn’t 100% about the diagnosis either. Of course. So now I play the waiting game to see if the treatment works.

While it’s great that I finally have some kind of plan to tackle this thing instead of fearing the worst for the past few weeks from not knowing, the news isn’t the best either: according to my doctor, my joints will take multiple weeks to heal. Groan… According to Google, “the pain should go away within a year.” Gasp! Yes, yes, I know - serves me right for going to Google. Again. Didn’t I learn the last time?

This protracted healing feels particularly excruciating and annoying to someone who is generally active. These days, I waddle like a penguin because the joints in my hips, knees, and butt are on strike, and I move like a robot in dire need of WD-40 because of the pain in my neck, shoulders, elbows, and rib cage. I feel hopelessly trapped in my own body.

Meanwhile, it’s summer break, and I’m staying home with my girls, operating in slow motion while my girls are in fast forward. It’s been challenging, but I have to give them credit for being so understanding throughout this ordeal. When a friend of mine, an inspiring cancer survivor herself, tried to dissuade me from feeling guilty for not being the mom I want to be for my girls, she said, “this will help teach your kids compassion.”

And I was so pleasantly surprised at just how right she was.

Little Miss is mindful of my impediment and has been quite helpful around the house, offering to put Pickle down to nap or read to her sister so I can rest, or to tidy up an area because I can’t bend. Being a bookworm means she is out of my hair most of the time, reading two to six chapter books a day in some corner of the house, giving me ample space while she’s on an adventure in some fictional world. Sometimes, I even get to read next to her, which is the best.

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Pickle, who has witnessed both my good and bad days, will wistfully ask “are you all better yet mommy?” when she sees me more mobile on my better days and when I admit no, she plants a kiss on my hand as if to say, it’s okay, you’ll get there soon. Once, when we walked across a field and happened upon a dandelion, she picked it up and handed it to me: “Here mommy, this is for you so you can make a wish for your pain to go away.”

Oh, this girl.

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And here I thought it was going to be hard with the girls, when in fact they’re the ones who keep me going. Literally. They keep me active as I’ve been taking them places, preparing meals, and cleaning up after them, which can be exhausting, but it also helps with my condition because constant motion prevents my joints from stiffening. It’s the movement after a period of rest that hurts the most.

Every time I stop moving, I feel my body contracting. I imagine it to be like rigor mortis. Only I’m still alive.

Alive and grateful, I should say. I may be slow and in pain, but I’m here with my family. A blogger friend of mine recently lost her 30-year-old sister to cancer, and I felt foolish for complaining about my aches. Perspective is a sobering, humbling exercise, and every time I feel myself sinking, I think about those who have suffered more - the recent flood victims in Texas, those afflicted by far worse diseases - and it clears my murky thoughts. Despite my complaints, I’m still one of the lucky ones.

Perspective also forces me to focus on the “can’'s rather than the “can’t”s. Like a frickin’ Pollyanna with my rah-rah think positive campaign, I refuse to revel in the sadness and misery of my condition.

I can’t run, do yoga or lift weights, but I can swim. Slowly. Any activity helps not just my joints but my emotional state. I find I can better cope when I feel stronger from a few laps in the pool. Plus it feels great to feel light and buoyant in the water after all this tedium of mobility on land. Lately I’ve been able to use the elliptical machine too. Progress perhaps? But I won’t allow myself to get too excited. I’m still waddling after all.

With kids at home 24/7, the mess is harder to contain, but I’m also someone whose emotional well-being is easily influenced by clutter. That means there’s no letting things slide just because I’m unwell. I can’t, however, easily bend to pick things up, but I can purchase a grabber that can help me reach better. I named it Grippy, my new best friend. We’re together a lot.

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It actually hurts to sit at my desk to work for prolonged periods, so it’s a big reason why I can’t contribute financially to my family, but on the flip side, I can spend that time with my girls instead. At six and four, they’ve hit this magical age where they’re far less needy and clingy with me and more dependent on each other for company, which omigodisthisforreal?? I’m so in love with this evolution of parenthood right now, especially since it couldn’t have arrived at a better time.


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Thanks to record rains, Lake Travis is full (yay!) and I can’t keep up with the weeds in our yard on my own (boo!), but, with a little incentive, my girls can help.


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All this to say, thanks to my sweet and supportive family, I’m coping. I won’t even go into how My Guy has been so amazing during this difficult time, because that could fill another blog post, which kinda did this past Father’s Day, but he knows just how ridiculously grateful I am to have him.

While none of this is easy on us, I have to say it’s pretty remarkable how we’re capable of adapting to a new normal - even when there’s nothing normal about it - so quickly. We’ve developed new routines around my pain, like having My Guy crack my back every night before bed so I can breathe better. Or going to the gym on Tuesdays and Thursdays so I can use the elliptical and the pool for my laps. I could do these at home, but at the gym, the girls get to interact with other kids at the facility’s Child Watch center that often involves Kid Fit activities of their own. They make new friends; I fight disease and depression. Win, win.

My follow-up visit to the doctor yielded more questions, X-rays and another prescription since I’ve steadily gotten worse, not better, from the last time I saw him. This new medication is a steroid to reduce the inflammation. I’m not sure if I’ve improved from it yet as it’s only been a couple of days, but I’m already feeling one of the side effects, insomnia, as I compose this at two three in the morning with too-bright eyes for this time of night.

Sure, it sucks that I can’t sleep, but at least I can finally finish this post that I started over a week ago.  

See? I’m totally getting a hang of this Pollyanna thing aren’t I?

Sunday, June 21, 2015

To the man

This post is dedicated to the man…

…who makes us breakfast every morning, no matter how busy his schedule is. Sure, it doesn’t always look like this delicious breakfast taco that he’d make on weekends or on “Weggsdays” (Eggs on Wednesdays) but waking to his dedication to his family will always feel wonderful.

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… who takes our girls exploring with him and teaches them the value of adventure and curiosity.

 

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…who pushes them to do more, even (or especially) when they’re afraid, promising to always catch them and he does.


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…who is the bedtime routine guy (bed, bath, teeth, books and songs) because he breezes through it better than I do. Besides, for the girls to begin and end their day with their daddy who’s often times busy with work in the middle the day, what could be better?


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…who is the resident geek and gamer, and because of that, our girls will easily know their way around technology.

 

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…who has a knack for goofy antics, which always, always get the biggest belly laughs and frenzied giggles from our girls.

 

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…who will never accept that his girls can’t do something just because they’re girls. In fact, he makes sure they know that they can do anything he, a man, can. Even toilet repair.


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I would go on and on, except I don’t have pictures for all the big and little things this man does for our family. But from what I have here, it’s not hard to see how lucky we are to have him in our lives.

Happy Father’s Day to our favorite guy. Thank you for all that you do for us and for loving us the way that you do.


Thursday, May 28, 2015

A birthday letter to my four-year-old Pickle




My dearest Pickle,

Today you turn four, and while I go through the usual wretched emotions of seeing the last threads of your babyhood slip from my grasp, you’re “super excited” to be this big girl of your dreams - one who can do more, be more, except you’re already there and don’t even know it.

Sure, you still can’t read the stats in your Pokemon book, and you’re not quite tall enough for the bigger water slides that you've been desperately wanting to try, but what you’re capable of with your heart? I tell ya, you could move mountains. 




I’ve never seen anyone as generous as you, happily giving up your share of ice cream ("ice cweam!!!") for your sister who you know loves it too and making sure everyone around you gets to delight in what you enjoy. Admittedly, you can get a little overzealous with your sharing: “HERE! YOU HAVE TO TRY THIS!” but I know it comes from a good place.

This good place that has said, countless times, “I just want to make you happy” when you go out of your way to do something unexpected just so you can make the other person smile. And when someone thanks you for your loving gesture, you let out that little giggle that tells us that you derive more joy from giving than receiving, which is pretty incredible for any age, let alone a three- and now four-year-old.





This good place that is also fiercely protective of Little Miss, who’s 2.5 years older than you and who you absolutely adore,“Stop yelling at my sister!” and then you turn to gently say to her as you try to embrace her in your pudgy arms: “It’s okay, I’ll make you feel better. What do you want? Tissues? I’ll get that for you ‘k?”

This good place that created this conversation:

Me: You know what my favorite thing about you is? Your heart. Because you’re so kind and so giving. You always share what you like with other people.
You: That’s because when I make other people happy, it makes my heart happy too.

That right there. That’s perfectly, unequivocally you.

That is not to say that you’ve been an angel - I’ve never called either of my children because, come on, I know better. You’ve had your Terrible Three moments, and boy can you make a scene. But that part of you is par for the course - you’re growing, you’re testing your limits and pushing boundaries. I get that, and while that’s not my favorite part about you, what comes after sure makes up for it.



Being a little shit is just one of your many talents

Your ability to be self-aware after a difficult episode and walk up to us, unprompted, to apologize often melts us: “I’m sowwy Mommy...I’m sowwy Daddy…” You hate being on the wrong side of our affections, and we can never stay mad at you so it always ends in a teary embrace and wet kisses on your soft cheeks that still, much to my delight, hold traces of your baby fat. We recognize the moment when all is right with the world again when we see that light radiating from within you. That light that shines bright enough to help me find my way on days that I am lost, especially now with this mysterious pain that has descended on my joints, leaving me hurt, baffled and weary every day. Which you often ask about because that's just the kind of person you are, always aware of the feelings of others: "Are you feeling better today mommy?"

I love, as family clown, how funny you are (as your Daddy says, "you’re a goofnut”, which sends you cackling) and how smart you are (despite declaring “I can sing Twinkle, Twinkle Star in  Spanish!” when in fact it was in Mandarin. Ahem - we'll work on that). And how, at four, you’re already swimming gracefully on your own and making new “fwiends” easily everywhere you go. 



You can be fearless, but when you have a nightmare, you climb into bed with me at night, "just for two minutes", and you can be so sweet because when that time is up, you willingly uncurl yourself from my arms and head back to your room, saying "I don't want my sister to wake up and not find me there with her."

It amuses us to no end that you continue to struggle with rolling your tongue for “r” words and your lisp seems to be stuck to you, but I also secretly celebrate this impediment because we can fix these little hiccups in your speech when you’re older, but we can’t ever have our little baby back once you decide to leave it all behind.

However, instead of fearing and fighting the inevitable, I realize I should just be grateful for every moment I get with you because you know what? Whether you’re 1, 4, 10 or 20, it’s going to be extraordinary no matter what. I’m so incredibly proud to be your mom, Pickle, and I love you more than words can say.

Happy birthday my sweet. Thank you for being the light and joy of our lives.

Always,
Mommy










justine

Thursday, May 21, 2015

The thing I don’t want to talk about

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I don’t want to talk about this mysterious and debilitating pain in my joints that has been plaguing me ever since I came down with the flu for the first time in years.

I don’t want to talk about how, in the past week, I’ve barely been able to walk or sit, let alone play with my kids or get outside to run. Heck, I can’t even do yoga.

I don’t want to talk about the guilt from seeing My Guy step in for all the things I can’t do for my family or myself, like getting the girls ready in the morning, making dinner (or breakfast or lunch!), picking them up from school, laundry, dishes, groceries, every *#@&$^@^ thing, although I do want to say just how AMAZING he has been for being there for us every time we’ve needed him.

I don’t want to think about what’s wrong with me, although I can’t help it. Hours of poring over pages and pages on the Internet gave me a Fibromyalgia scare that had me in tears for days. So yeah, not only do I not want to talk about that, I don’t ever want to do that again either because the strain from worrying is bad enough, but the stress from a wrong self-diagnosis was much, much worse. But not knowing? That’s killing me too.

I don’t want to talk about the desperation - and even the betrayal - I feel, not knowing what is happening to my own body. A desperation that has led me to try acupuncture, cupping, and Chinese herbal medicine for the first time because the June 30 appointment with the Rheumatologist seems forever away.

I don’t want to talk about how it feels to see my family bustling around me and I’m helpless to join them. How my heart breaks a little each time I say no to a request to see the fort the girls built, watch the birds with them, tuck them in their beds. Because it physically hurts. And this guilt is emotionally draining.

I don’t want to talk about this crippling fear I get occasionally - what if this never goes away? what if this gets worse? what if...what if...what if <all the worse things that can happen> is happening right now?

I don’t want to talk about how it feels better today than it did yesterday, and I think I see the light at the end of the tunnel, but I’ve seen that light before only it was extinguished the next day when the pain didn’t just linger but was magnified.

I don’t want to talk about this hope that appears in and out of focus with each day, depending on what my body has in store for me, and it can get exhausting, trying to lift myself off of my own despair with this hope. Maybe I’m on the mend, maybe it’s a fluke, maybe it’s all going away...

I don’t want to talk about how I’ve been waking up every morning disappointed because well, it still feels like hell, and I have to force myself to painfully endure all the things I love doing and could usually do with ease for another day.

I don’t want to talk about any of the awful stuff, hoping that staying positive will do the trick, hanging on to whatever fucking platitude that will get me through the moment - this too shall pass, we will get through it - but I guess I’m failing spectacularly on that front too, just like the way my body is failing me.

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Don’t be fooled; pain can look like this.

Wednesday, May 6, 2015

A sad first weekend away from my family

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I don’t know how it happened that before this past weekend, I had never left my family for a trip by myself. It’s not like I’d never felt the need to go away (believe me, that happens once a day at least) but I guess I never made it a priority.

But when you haven’t seen your childhood friend in more than seven years, and she just happened to move one state away from you after living in Malaysia and Australia - really, anywhere but close to me - for so long, I jumped at the chance to meet her halfway in Dallas for a girls’ getaway. Oh the food we would demolish and the conversations we would enjoy together; I just couldn’t wait.

When the day came for me to drive the 200 miles to Dallas however, I woke with chills, aches, and a sore throat. What the what? I couldn’t believe it. This wasn’t just random shitty luck. It’s TOTALLY shitty luck because I never get sick. Okay, almost never. I’m not exaggerating because even my six-year-old Little Miss noticed and commented several weeks ago: “Mama, I’ve seen Pickle sick, I’ve seen daddy sick, and I’ve been sick, but I’ve never seen you sick. Why’s that?”

“Well,” I started smugly, grateful for a teaching moment, “That’s because I work out and I eat healthy and…” Yada yada yada yada. As I miserably fought my symptoms on my way there, I thought back to that moment and leered at myself. Where’s that healthy immunity now, %#@*&#@%*?!

After our gleeful reunion at DFW airport, where my friend landed, and we finally found our way out of the frickin’ airport, which has the worst signage of any airports I’ve visited, by the way, we made our way to our first stop: the Malaysian restaurant. Like that’s a surprise.

Because of my ailment, I could barely eat the food I’d been dying to inhale for the past few months. Even Char Kuey Teow couldn’t get me out of my appetite funk, and that was a sad, sad day.

What’s worse is that after the meal, we went back to the hotel...to take a nap. I don’t know if it’s my sickness or just aging in general, or that we were both weary from travel, but we were perfectly content to rest in a darkened room until our next meal time.

We then explored Lower Greenville with their many trendy restaurants and cocktail bars, and all I could think of was some kind of soup with some kind of noodles. My friend, who had to overcompensate for my underperformance and ate more lunch than she would’ve liked, was craving something much lighter, and sushi sounded great to her. We compromised and went in search for a Japanese place that served both ramen and sushi.


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Once again, when the food arrived, my appetite failed me. In fact, the complex flavors of the broth that often reeled me in actually offended me that evening. I preferred eating the fried chicken gizzards and the agedashi tofu (have I mentioned how much I adore eating with my Malaysian friends?) but the green tea was my favorite part of the meal. Again, what a sad, sad day for this food fanatic.

Pathetic, in fact. Especially when we arrived back at our hotel at 9PM on a Friday night. Oh yeah, we ladies sure knew how to party. I was so grateful for a friend who understood, and who is generally pretty low-key so all this eating and resting didn’t bother her. All wasn’t lost however. Despite my aches and chills, we still managed to catch up on each others’ lives throughout the day and “The Bridget Jones’ Diary” movie that played on the hotel TV kept us entertained that evening.

When I woke the next day with the same dreadful feeling, I knew I had to snap out of my denial and admit that my friend was right - I had all the symptoms of the flu. I was sick and I needed to find a way to get over it. I was just supremely annoyed that it had to happen the one weekend I finally made plans just for myself after what, nearly seven years of planning my life around others’? And since I’d always been the caretaker of the sick bodies at home, it would’ve been nice for the flu to hit when I was actually home, when I could finally claim some payback and be the one who got pampered while the rest of the family scrambled to tend to my every whim and need, like fetch me water, fluff my pillow, feed me soup…hey, one could dream.

And so I begrudgingly made CVS our first stop, took the DayQuil I procured, and made our way to brunch, determined to beat this thing. Drugs are often my last resort, but without my usual arsenal like bedrest, homemade chicken soup or “jook” (Chinese rice porridge) available to me, I had no choice but to choose the alternative.

And voila! It worked.


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Even though I hurt in some places, ate a little less, and walked a little slower, I was well enough to explore Dallas and continue to have deep, long conversations with my friend of 33 years. After all, when you go way back like that with someone, you have plenty to talk about. The memories alone would’ve filled the weekend, but we also opened up about the lives we led apart as well as our current personal challenges.


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Within the pristinely manicured grounds of the Dallas Arboretum and Botanical Garden, on a stroll in the Uptown neighborhood, during a late-evening trolley ride to Downtown Dallas for cocktails, on a walking tour of the historic West End district where we could see the X that marked the spot where President John F. Kennedy was assassinated, and during our food truck lunch at the family-friendly Klyde-Warren Park that’s built over an expressway, our conversations flowed, often punctuated by laughter and interrupted by selfies.


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The city we explored felt more like a backdrop to the connection we were both trying to re-establish. It had been years after all, and so much has happened in between.

Can we ever remain the same in some ways to some people? Apparently, this weekend had shown me that it’s possible, and I, for one, am ever so grateful. I’ve lost so much from my past to build my life here in the States; I couldn’t lose this friendship too. Sometimes it feels like the only thing that’s keeping my memories of my school days from fading completely. (Thank you, my sweet friend.)

After goodbyes (and miraculously navigating out of the airport labyrinth on my own), I’d arrived home in one piece, but gladly fell apart at the sight of My Guy. Having had to hold it together all weekend so as not to ruin my friend’s time with me, and having always been the one to care for a sick kid or husband, I just wanted to give myself permission to crumble for a bit.

I think I’ve earned it.

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