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."  

My Village

They say "It takes a village", and I have the best village around. Seriously. A few weeks back one of my friends told me she wanted to organize a group of people to come and help me out with some housework, and I gladly accepted. All I had to do was be there and tell them what to do. 

Clockwise from top left:  Katie & Elena tilling soil.  Anna-Lisa and pregnant Sheena working in the side yard.  Mandy feeding Aria, Katie & Whitney w/ Giovanni & Ryker in the background.  Mandy working on the umbrella base.  David & Ben working on the baby swing and Robb in the shadows with the bird feeders.

They showed up with food, drinks, work gloves, cleaning supplies, a couple babies and servants hearts at 7:30 this Saturday morning.

God blessed us with beautiful weather and my "somebody-else's-honey do list" got done! Mowing, weeding, fertilizing, bagging wet leaves, tilling, moving rocks, hanging a baby swing, setting up the umbrella and a few other yard tasks were all done in 3 hours. Aria was loved on and kept busy with the other kiddos while I pretty much bossed everyone around. (Hehe).

Not only did so many of my chores get done, but I also got to catch up with some of my dear friends that time has not allowed me to see enough.

Later Aria and I gave the swing a try and she is one happy baby! We played in the grass and I didn't have to keep her from trying to eat the field of dandelions.

To add to all the outdoor help, when I was away earlier this month I came home to find that my amazing neighbor, who has been tenderly taking care of my yard (and snow removal) for the past 7 months, had replaced my very broken fence gate. I still have to chat with him for more details on how he graciously took care of this for me.    

I truly could not do this without the amazing people God has placed in my life. 

Brandon asked only 2 things when he knew he was going Home. One - for us not to be mad at God, and two - to take care of his girls. And on days like today I like to think that he is in Heaven, joined by the loved ones of my "villagers" watching God's Kingdom at work here on earth, taking care of his girls.  And they are overjoyed for us all.  I could not be more thankful.

Miracle Moments

It's been a while.  Time has been hard to come by, as have words to describe this part of life.  I've tried to get just a quick update out with some pictures numerous times, but I've found nothing to say.

Where am I in this season?  I don't know.  Some days I don't cry, but those days are usually very long and exhausting days.  Other days I long for the time when Aria goes to bed so I can sit in my misery a little bit, if I even have the energy to do so.

I've been attending a Widow/Widower group at a non-profit grief support center.  I was initially discouraged by the fact that it's clear across Denver, about a half hour drive away.  I questioned God, "Why don't you ever bless me with proximity?!"  But I found after just one meeting that it was worth every minute and every mile.  My friend encouraged me to use that drive time intentionally.  I have some quiet time to myself, so why don't I make phone dates for that time? (Don't worry - I chat hands free.)  Another idea she had was to listen to audio books or sermons on the drive.  Now, I actually look forward to my drives across town.  I've drawn strength from various sermons, gained a better understanding of Grace and Heaven from numerous books, and have whined, cried, yelled and laughed in rare uninterrupted adult conversation on these weekly evening drives.  I never would have anticipated how God would use that time to minister to my heart so much.  A blessing in disguise.  

Then I arrive to a room full of others who are the remaining half of a whole.  Some as recent as just a month before - sitting there disoriented and shocked that they are indeed at a Widow(er)'s group.  Others 5-10 years out, now giving back to the place that held them up in their devastating loss.

Every time I pull up to the HeartLight Center I am still in disbelief that this place I feel so at home at is part of a Funeral Home.  I shake my head and repeat for probably the 20th time that day, "How did this happen?  How did this actually happen?"

But once inside I'm greeted by those who know the pain and loneliness I'm feeling.  There is something amazing that happens when a room of 25 people can share the raw unedited emotions of bereavement, the thoughts that seem truly crazy and the ridiculous things we find ourselves now doing, and almost every head in the circle is nods in agreement.  Though it feels like it, we are not alone, and I am so thankful for that.

I've also been attending GriefShare, a 13 week program hosted all over the nation.  This week part of the topic was on "Miracle Moments". "A miracle moment is when God's presence suddenly appears and is so profound that it changes your perspective. - Zig Ziglar"

I feel I have been blessed to have had many of these throughout this journey.  Truly it is what has been getting me through.  Since Tuesday's meeting I have been asking God to give me a Miracle Moment.  I have kept my mind open, but I wasn't finding anything.  I was frustrated and just feeling deflated and so far from Brandon.

Then after Aria went to bed I was drawn to my office where I felt ready to listen to a CD I found while organizing my office earlier this week.  A CD of songs Brandon had made for me when we were dating.  

How the heck this turned up is honestly beyond me.  It moved with us from Pennsylvania to Texas and then relocated 4 times within Colorado, and yet it was in a box in my office closet.  Not in the crawl space with all that useless crap that has remained unopened since it was sealed and loaded in a Uhaul 10 years ago, but in the only box in the closet.  And I have no recollection of seeing this CD since Brandon gave it to me in college.  But there it was.

I listened to the songs lightly as I looked back on pictures of us, leaning into my grief.  But suddenly I was attune to just a couple lyrics:

'I'm gonna be here for you from now on,
This you know somehow.
You've been stretched to the limits but it's alright now.
And I'm gonna make you a promise
If there's life after this,
I'm gonna be there to meet you with a warm, wet kiss.'

(Keith Urban - Making Memories of Us)

The tears flowed freely.  Sadness.  Heartache.  Disbelief.  Anger.  Resolution.  Hope.  Gratefulness.

I got my Miracle Moment.  God reminded me that our love and our lives are eternal, and Brandon is eagerly awaiting that moment, just as I am.  I needed that, and it felt almost as if Brandon had said it directly to me.  I believe God knew when Brandon made that CD for me 10 years ago that I would need to hear exactly that tonight.  And somehow that CD found it's way into my hands just when I needed it.  And tonight I will be grateful for that.