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?

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