Friday, August 5, 2011

Ode to Flare (up)


(Nerd sidenote: thought this picture was appropriate cause of all the recent solar weather :) )

Flare-up. Or as most auto-immune disease sufferers say: a flare.

Flare-up (compliments of Webster)

1: a sudden outburst or intensification
2: a sudden bursting (as of a smoldering fire) into flame or light

Autoimmune diseases are interesting creatures. They vary incredibly from patient to patient. One can test positive for one disease and negative for another, yet still have symptoms of that disease. New symptoms can pop up and symptoms can disappear completely. A large majority of people with autoimmune symptoms thankfully live a large portion of their lives with minimal symptoms and then a flare occurs and you're just miserable.

When it comes to sharing about my disease, I always think: "should I really post this, is is too much information?".

But after realizing that I would tell everything that I post to anyone who asks (this isn't a secret!), I post:

1)
To share what God teaches me through my disease
2) To help myself process what I learn through each up and down
3) To help people understand autoimmune disease better
4) To attempt to encourage those who are suffering, or who know someone who is suffering

I haven't had a flare since last fall (it was a LONG flare, but settled by January). However, I've been flaring for almost two weeks now. For me, a flare means my joints hurt, I run a low grade fever almost constantly, I start feeling worse as the day grows later and I have no energy. For me, which joints are affected changes from day to day. For this flare - it has been my fingers, wrists, toes, ankles, and shoulders (upper back), with a dose of my SI joints thrown in every few days or so. Flares can last days, weeks, months. It is always different and you never know exactly what to expect or when your immune system is going to start behaving again.

I am thankful that my flares only worsen in the evening, which means I can still be productive at work and feel fairly normal until about 4pm (woot for being a natural morning person!). I've found morning workouts are okay as long as they are not too intense and I stagger them every other day; in fact, they help work out some of the joint stiffness. I crawl into bed around 7 or 730pm because usually I am hurting so bad by then that it takes awhile to fall asleep and I usually wake up during the night hurting. I curtail evening activities, because while I have gotten pretty good at pretending I feel okay so I can still have a decent social life during flares, it does take a lot out of you!

For this flare, my rheumatologist put me on some oral steroids for two weeks (IV steroids didn't work last time and we're still not sure if my usual steroid injections helped in making my back go all wonky). Four days into the steroids, I've seen a slight improvement...not as great as I would have hoped. The next step is tweaking my immuno-suppressive meds - according to the doc I still have a lot of wiggle room. But we just tweaked them last year too...I don't like it when my body destabilizes so quickly. Silly body.

I've noticed during this flare, that I am handling it better spiritually and emotionally. Trusting God more, not getting as frustrated when I have to cancel hanging out with a friend 'cause I just don't feel like putting on a smile-mask anymore. Taking one day at a time and doing what I can each day. Now, I am not perfect. Oh no. Believe me, there have been some tearful nights lately where I just HURT and I am sick of the struggle. But God is good to remind me that there is a reason for all of this (of course, He hasn't revealed that yet, but there is still peace in the thought :) ). I am learning so much about Him. He doesn't give me more than He and I can handle. And His plan is more incredible than I could ever imagine. So I focus on that when I start hurting really bad (and then pray to fall asleep REALLY quickly ;) ).

So, here's to this flare ending shortly. Don't take good health for granted. Do what you can.

1 comment:

Megan Bennett said...

So sorry, friend. I pray God brings you through this flare quickly. If we can help you in any way please let us know.