Making Lupus Look Good

May is Lupus awareness month, and it's been on my heart to share just a little bit about it.  When people find out I have this chronic illness I usually get 1 of 2 responses.

One:  "What is Lupus?  I think my friend's, cousin's, neighbor has that..."

Well, in short Lupus is a chronic autoimmune disorder.  This means my body creates antibodies that can not tell the difference between foreign invaders (like a virus) and healthy tissues, so my body attacks itself.  These attacks are called "flares", which can last for days, weeks, months or years.  A flare can be set off by stress, illness, over exerting yourself or seemingly by nothing at all.

Everyone's flares are different.  Mine typically involve extreme fatigue, joint pain, headaches, nausea, night sweats, fevers, and a grab-bag of other random crappy feelings.

The disease can range from mild to severe, and can be fatal.  There is no cure, but there are many treatments, and the disease can go into remission.  For me, I am on daily low dose steroids and an immunosuppressant, along with a handful of other medications and supplements.  When I flare I typically do a "burst and taper" of steroids over a 3-4 week period of time which shocks my immune system back to reset.

Typical Pain Chart

Even in my best days following a "reset" I deal with daily chronic pain, on a scale of about a 3-4.  On these days I still wake too early, wanting just to sleep, but my hips and back are in too much pain to continue laying down.  I need to get up, move out the morning stiffness and eat so I can take all my pills.  It takes about 4 hours after that until I feel human, but even then I have to be constantly aware of how much I do, or I will pay for it for days to come by what I call mini-flares, where I have to rest (ha!) to avoid another steroid treatment.  This daily balancing act is beautifully described in The Spoon Theory. (<--click for more information)

For those whose disease has progressed and is moderate-to-severe, their lives may involve dialysis, chemotherapy, kidney failure, long term hospital stays and worse.  I am grateful that for now mine is in the mild-to-moderate category and hopefully never progresses.

The second most common response is:  "Well, you don't look sick..." or "You look like you're feeling better..."

Well, thank God I don't look as bad as I feel!  I use a lot of "spoons" to ensure that, because if I dressed the way I felt, I couldn't go out in public most days.  Lupus is an invisible illness.

Believe it or not, the above pictures were taken on the same day.  On the left, a pain level of about 8, and on the right about 5.  Pills, heating pads and rest paved the way to putting a smile on my face and real clothes on my body despite how I felt.

I often "don't look sick" because it makes me feel worse emotionally to look how I feel.  Depression is very common with autoimmune disorders because of the emotional toll it takes to endure so much constant physical pain and life limitations.  However, I have often been tempted to just look how I feel so my disease doesn't seem so invisible. 

That day, my friends saw the Christina on the right, and probably had no clue my pain was at a 5, and had been an 8 earlier.  That every step I took out the door I could feel pain in my back, hips and knees, and that it hurt to grasp the steering wheel, and despite it being warm outside, I drove with the heated seat on like a mobile heating pad and the air conditioning on to counteract it.  That I wanted so badly to wear cute sandals, but that I have to choose my shoes based on where I am on that pain chart.  

My Shoe-to-Pain Chart

Anyhow, you get the point...

I don't make my pain known most of the time.  I'd rather that be my burden to carry, otherwise it would lead to:

"Why didn't you tell me you felt so awful?  We could have done something else! I feel terrible!"

Ha!  If I put a voice to my chronic pain, I would be a chronic pain in your @$$.  

But bless your heart, my selfless friend.  I appreciate your flexibility and concern more then you will ever know.  However, I am learning my limits.  I am starting to admit when I can not do something, or need to cut something short, or even need to cancel.  But I am a fighter and I am determined to not let Lupus take everything from me.  I will gladly push it to my tolerance limit (and often a bit further) in order to spend quality time with those I love, and pay for it later...alone.

I did not write this for pity or attention, I wrote this to attempt to put a voice to and bring awareness to something invisible that many, many people suffer from.  Chronic illness, invisible illness, autoimmune disorders, etcetera.  I personally don't have a hard time expressing the depths of something I struggle with, but so many do - and maybe this can be a little voice for their pain too?  

Ultimately, I trust that though I suffer with this, that God will use it.  Many others in their suffering have ministered to me, giving me encouragement, advise and hope, and I pray that God will someday do that through me as well.

1 Cor 1:4 , [Praise be to God] "4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."