Saturday, August 26, 2017

Hard Love

I never really understood what it was like to be given a lot of well-intended advice that was going to either fall completely flat or cause such an adverse reaction until several years ago. And while I am sure that I have been an offender of this horrible practice, I would like to believe that having read The Broken Way by Ann Voskamp, I have a deeper understanding of suffering with someone instead of trying to fix it or make it better.

A little over two weeks ago I shared that my blood work didn't come back favorable. When I was diagnosed with lupus in 2008, life changed. And while 99.9% of those changes have been for the better, there is still that .1% that I wish wasn't reality. So today I'm going to share my story. This might be a bit of a longer post so grab a cup of coffee and settle in for a few minutes.

Before we get to diagnosis there is something you need to know. I grew up in the church. While I believed in God and Jesus, it wasn't until a series of moves, first when I was about to start high school, and then 3 from the time I was married, that I actually became a Jesus loving Christian. I say that because I was pretty decent at following denominational rules. But I can say without a doubt, I had absolutely no relationship with God or Jesus. I just did what I was told and that was it.

One move, from Columbus to the outskirts of Philly, ended up leading me to a non-denominational church. While there is a lot more to the story than a simple relocation, the sermon I heard at Calvary Fellowship Church changed my life forever and subsequently the life of my husband and children. Without that move, I don't what would have happened when I got sick if I didn't have Jesus. (On an interesting sidenote, the church I started at was Sacred Heart, the church I started to really get it was called Resurrection, the church I became a Christian was called Calvary, the place I was baptized was called Grace, and the place I now belong is Northway. None of that is a coincidence.)

So, one day in February of 2008 I was on my way home from Cranberry in the dark. Just as I was driving past Northway my car hit something. I assumed I'd hit the median sliding on ice until I saw a deer in my side view mirror partially airborn. The car was totalled. Until the day I meet God and can ask for certain, I will believe the stress of that situation triggered a dormant predisposition to systemic lupus. One month later I was a very sick wife and mom.

Not having any clue what was wrong we started with our PCP. Tests were run to see if it was rheumatoid arthritis but that came back negative. What was frightening was my blood work. My liver enzymes ranged in the 500's-600's, eerily near the 700 mark. My CBC was completely out of whack and I was so tired I had to nap after a shower. Also at this point I had to shower twice a day because only a near scalding shower at bedtime could provide enough relief to make me fall asleep.

I didn't realize that the sunlight coming through my windows was the culprit behind my scalp pain. Needless to say I had to wear a scarf on my head even indoors. On the brighter side, the lovely and talented stylist I had at the time who sadly now lives in Florida, only charged me half-price for my haircuts because I only had half of my hair. We even started looking at the possibility of custom wigs that you can apparently skydive with in case my hair didn't grow back. If you want, I can show you the thin spots where it never fully returned. (Sidenote: Sadly I needed a new license in 2008. The day it expired was one of the best ever....I had long, beautiful hair in the renewal.)

Eventually there was a hematologist involved who was talking about a bone marrow biopsy if we didn't get answers and soon. But one fateful conversation about me being hypothyroid, and the fact that it was Hashimoto's (auto-immune hypothyroidism), gave him reason to believe the rheumatologist I was about to see would have all my answers.

Needless to say, one appointment, labwork taking about 14 vials of blood, and a weeks passing, we had an answer. Systemic Lupus. I now had three prescriptions added to my synthroid (prednisone, plaquenil, and imuran) and supplements like fish oil, flaxseed oil, a probiotic, and vitamin D. My vitamin D levels were so low I had to take what's called a bolus dose (a lot over a short period) before I could do a maintenance level. 25,000 IU's a day for 7 days and now 5,000 a day for the rest of my life.

It took until November to be weaned off the prednisone but the imuran and plaquenil remained. It wasn't until January of 2012 that I had to stop the imuran for a surgery. I was to be off it for two weeks prior and two weeks post and then start again. Once the two week mark hit I knew deep down God was saying not to take that pill. I found out my incision, while healing, had a minor infection. I won't even entertain the thought of what could have happened if I'd taken that drug.

But since that surgery I hadn't needed it. My numbers have been stable for just over 5 years. That's huge. But now, the activity is elevated, my white count is down, I'm on prednisone hopefully for just a very short term, and have to go back on imuran for at least a little bit. None of this was on my calendar.

But here's the thing: as much as this has caught me off guard, God knew. He's had this on His agenda since He said Let there be light. He knew all the good that would come out of this, all that it would teach me and show me about His love, the way it would grow my faith, the story of His goodness that I would get to tell, and so much more.

Just to highlight, I have the best doctor in the world who now also treats someone I love very much. If I hadn't gotten sick, we wouldn't have known her. But God knew.

I started a relationship with God and Jesus before diagnosis and was surrounded by incredible godly and compassionate women at the time I was rapidly going downhill. God knew that would be crucial.

My faith has drastically grown knowing that God alone sustains me and that the only thing a doctor can ever do is give information. God alone knows how it will work out. Regardless of what labs look like or unexpected things come up, only God can determine how much time I have and whether or not lupus, a complication from lupus, or dropping a weight on my head once I can lift them again will take me out of the game and into His arms.

What you need to know about lupus and me is this: It's not contagious, if you are sick I will stay away from you, I am not yawning because I'm bored, I can't sleep enough to not be tired, every day is a complete mystery as to what will happen, I try to take advantage of every moment I am 'able' but sometimes misjudge what I can truly handle, and God has been carrying me through this from day one.

Perhaps one of the greatest explanations of it can be found in The Spoon Theory. No, I generally don't look sick. But how I look has little, if anything, to do with how I feel. I don't talk about it a lot because usually I am really good. But right now, not so much. This time around my jaw hurts and if I talk or smile too much the pain is unbearable. Not to mention what all this typing is doing to my hands. But you're worth it.

More than anything else I want my life to be one that displays God's glory and goodness. Like Job I didn't ask for this and I probably wouldn't have volunteered or signed up given the option. But for whatever reason, He's put me here for such a time and place as this and, like it or not, that includes circumstances such as these.

I don't know everything, but I do know that He is faithful and that nothing is done without purpose. He's seen me through before and He'll see me through again. I don't know how long this will last and I am not guaranteed that the medications that worked the first time around will work this time around. And that's not being pessimistic, it's reality.  But even if they don't, even if this goes horribly awry in one way or another, I will still praise Him.

I love you all and pray that beyond any measure you know how much God loves you, even on the hard days. It's the hard days that drive us to our knees and keep our eyes looking up to the only One who can sustain us from now into eternity. And someday when I get there, I suppose I might be happier than most to get my resurrection body. But until that day comes, I'll lift my hands as high as my shoulders can tolerate and bow low until the pain is too great. Because everything He does always proves worth it.

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