Wednesday, July 17, 2013

A Day in the Life (with Lupus)

Foreword: What you are about to read might surprise you, particularly if you know me well. I haven't chosen to share a lot of this story in the past for many reasons that I'll share over time. I'm blessed with a close family - those I was born with and those who I've adopted along the way - and if you're in that group and feel I should have been more open about my journey, please accept my apology. I love you all, I appreciate your support immensely and I desperately thank you for your prayers! 

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Lupus is a highly individual "complication" (I don't really like using the word "disease" - it causes me so much dis ease - hahaha, ok I'm really not funny...). It starts in different ways, it manifests itself in different ways, it's managed (or cured) in different ways. That's one reason it's so hard for doctors to diagnose and understand.

Here's what a day looks like for me ... with descriptions tied to symptoms (in parentheses).

It's hard to wake up in the morning - even after a full night of sleep, I don't feel "rested." (symptom: crushing fatigue)

My eyes take a few minutes to focus. I try to blink my left eye into focus and never quite get it right, resulting in a foggy haze if I keep my right eye closed. (symptom: my lupus seems to be impacting my optic nerve for one reason or another)

As I fix breakfast, I try to avoid foods that provoke an inflammatory response - bread, sugar, dairy, caffeine. (symptom: inflammation in the body tends to make autoimmune "flares" worse)

Sometimes I succeed, but usually, I break down and have coffee, which brings on a headache.

I spend some time talking myself out of being worried, by praying and reflecting on my "old faithful" Bible verse Romans 12:12 - "Be joyful in hope, patient in affliction, faithful in prayer."(symptom: anxiety - but I'm not sure I buy that it's totally a symptom - I think it's normal to be anxious about your body attacking itself. Am I wrong???)

After (or during) my morning worry-fests, I come up with a plan fun activities to do with my two adorable kiddos during the day that won't involve too much getting up and down off the floor. (symptom: joint pain, in my case, my back tends to "go out" easily) This is one area where "symptoms" really get to me - I kind of hate that I can't just get down on the floor and play with my kids.

Whenever I get out of the shower, I take care to lotion my arms really well (symptom: itchy, red rashes on both my arms) and choose long sleeves, even when it's hot (symptom: photosensitivity - too much sun can cause flares). But hey, at least it's not hot very often here in the Netherlands!!! (Dutch friends - see - there IS something positive about the climate!)

Before lunch (and before dinner, for that matter), I face the same worry-fest when planning out the meal - and questions race through my mind - "can I eat ____ (fill in the blank with whatever I have in the pantry)?" "will the kids eat ____ (fill in the blank with whatever I find that I can eat)?" "are the kids going to have massive food issues if I make them eat ____?" (symptoms: anxiety - inflammation- inflammatory foods)

After lunch, we have "quiet time" and I'm faced with a dilemma - do I lie down (symptom: crushing fatigue), do the housework that's been piling up (symptom: joint pain in the form of an aching back) or focus on a Bible study or book (symptom: anxiety)? Admission - this is when you'll usually see me on Facebook ;)

Afternoon activities are a "rinse and repeat" of the morning. Usually with a walk thrown in to get some exercise for everyone. If it's sunny, the walks bring on some dizziness and light headedness (both symptoms).

I've already mentioned dinner.

So, fast forward to bathtime and bedtime.

During baths, I have to be on my knees. Which isn't so bad, until I need to stand up (symptom: aching joints). Then, it's pulling both the kids out of the tub, drying them off and carrying the slippery Little Miss (my 1-year-old) to her room for jammies. For some reason, this always exhausts me (symptom: crushing fatigue) and results in heart palpitations, light headedness and dizziness (symptoms).

After bedtime, it's time for evening chores and whatever online-related activities I didn't get to during the day. Frequent pauses as I have a hard time "getting out the words" (symptom: fuzzy brain) and sometimes have to remember what I'm trying to say (symptom: memory issues).

By the time my bedtime rolls around, I'm usually cranky (symptom: crankiness, or "personality changes" - but seriously, isn't ok to just be "cranky"???) and really, really, really tired (yep, you guessed it, crushing fatigue). I often have chest pain (symptom) at night and I tend to spend time praying, reading the Bible and listening to relaxing music before I head to bed. I slather on some more lotion just before falling asleep and pull my hair back in a ponytail before my head hits the pillow (symptom: hair loss - I hate seeing any big clumps on my pillow in the morning, so I just pull it all back!)

And that's about it.

Add in occasional travel (I can't let this "complication" stop me from enjoying our Euro experience!) and a doctor's office waiting room once a week or so, and you know what it's like for me living with this thing called "lupus."

Now, you might be thinking - "wow, that's a lot." Or, "yuck." Or, "poor Christa."

I'm just gonna stop ya right there, friends.

Please don't.

These are my days right now, but this is a but a chapter in my story. And while it might be a little dark and twisty, I know the author. And He believes in happy endings. 

He's got a plan. A plan to give me hope and a future.

And for those reasons, despite the twistyness of this chapter, I can tell you that it is truly well with my soul.


And by the way, the author I mentioned? God.

Have you met? If not, I'd be happy to introduce you.

Because He's writing your story right now too. And it's got a happy ending, just like mine.

Wishing you lots of health and your own happy ending.

2 comments:

  1. I love what you had to say. It put a lot of what has been going on with me into perspective. I too have an autoimmune problem not diagnosed yet but I am very sure they will get to the bottom of it. Its my fault that has gotten me this far and family of course. I just wanted to thank you for sharing exactly what I go through everyday and putting exactly the way it is. Hope to hear more again soon. Jill

    ReplyDelete
  2. I love what you had to say. It put a lot of what has been going on with me into perspective. I too have an autoimmune problem not diagnosed yet but I am very sure they will get to the bottom of it. Its my fault that has gotten me this far and family of course. I just wanted to thank you for sharing exactly what I go through everyday and putting exactly the way it is. Hope to hear more again soon. Jill

    ReplyDelete