Saturday, August 10, 2013

One year later...musings and summation

I realized this past week that it has been exactly one year since some tests results showed my innards were all torn up, cause unknown. A whole year. It seems longer than that, not because time has dragged, but because of all I have learned and how I have grown over that time.

The stomach pain is oh so much better theses days! Some days, it's not even there. On the worst days, it's still not comparable to what last fall was like.  I still take a strong daily pain med, but recently got a prescription that will allow me to attempt reducing the dosage. A missed prescription refill a couple of months ago quickly showed me that I can't go completely off the pain med yet, but here's hoping to reduce the amount I need to keep the pain under the "noticeable" threshold. Baby steps! (Still no smoking gun on the cause, but I've got a theory that's soon to be tested and of course, the lupus is a major suspect).

I seem to be responding well to the Benlysta and I feel that my lupus is more controlled than it was a year ago. In fact, :exciting news: I have reduced the dosage of one of my immuno-supressive meds by half! It's taken eight months to slowly reduce it to see how my body reacts, but so far, doing pretty well. I say pretty well, because I tried the next step of reduction recently, and my body didn't like that, so waiting for this minor flare-up to settle and to just stick to my current dosage for now. I am ridiculously excited to not be taking such a mega dose of this medicine, so praise God for progress! :)

While predictability has been such a welcome reprieve, I continue to take one day at a time because things do go wonky from time to time and I think "whoa, what happened here?" It's a reminder that this thing called lupus and autoimmune diseases are not predictable and oh-so-sensitive to...pretty much everything :). And a reminder to not put my trust in patterns or predictability.

In my mind, the most impacting result of this last year, is the still and quiet place that the Lord has grown in me. That, my friends, is the most amazing, wonderful thing that has happened to this gal who always read the verse "gentle and quiet spirit" (1 Peter 3:3-4)  or "be still" (Psalm 46:10) and threw her hands up, knowing that her crazy, energetic, fast-talking personality would never allow her to be that way.  I've learned that quiet and stillness isn't a reflection of personality or physical action. It doesn't mean I sit there and do nothing, or never talk (pretty sure pigs will fly when that happens :) ) but it means that when things are crazy around me, when my sense of control (yes, it is a "sense") is lost, there is a deep-rooted center in me that is calm, still, and quiet. Waiting. Ears and heart open to the Teaching that is to come. To the Discipline that is to be learn. To the Love that is to be experienced.

Yes, there are still moments where I think, "hmm, maybe I was mistaken", when my thoughts and heart are all a-thunder with doubts and frustrations. And let's face it, gentleness is still a work in progress. But He brings me back. He "calms the raging storm." He is my quietness and my stillness, forged from a trust in Him that He has grown in me.  Oh, how I sought for this and tried to make it happen on my own terms (hello DecemberJanuary, and February), but He has taught me, yet again, that His ways are better and His timing perfect. Nothing that I could accomplish, but only Him.

Do I wish this last year had been different? YES. A resounding YES complete with blinky font and lights. I despise pain, suffering, feeling miserable, and the isolation that all of that sometimes brings. But, I can honestly say that I don't know how else I could have been pulled so far out of myself, so completely stripped and made raw, for Him to do the refining work and instructing He needed to, without the events of this past year. So, I wouldn't change it (I may try to blot it out from time to time ;-) ), but I wouldn't change it. What grace.


Red, raw, bleeding
Endless flowing tears and pain unceasing
Aching, groaning, ripping, tearing

crawling, grasping
broken, arms thrown, surrender

Tugging, closing, wounds stitched together
Presence, soothing
listening, seeds planted, growing
roots deepen

Breathing, resting
steadiness reborn, stronger
coolness, quiet, beauty from ashes
Him, not me

What grace.

Thursday, August 8, 2013

Fun reading books

I've been busy with some house projects and vacation (a vacation that didn't allow a lot of time for reading!) but I managed to tackle these three fiction books that I definitely recommend:

1. Ender's Game by Orson Scott Card

While sitting in the movie theater, about to watch Star Trek Into Darkness, the trailer for "Ender's Game" played...and I turned to my friends and said "now that looks like a GREAT movie." They stared at me and about three of them said at the same time, "You've never read the book!?" So, of course, I borrowed the book from one of them and seriously cannot believe I have never read it before now.

The first 30-50 pages were a bit disturbing for's Earth after aliens attack and kiddos are being genetically engineered to be soldiers. And six year olds talk like soldiers...not exactly the type of language (both in word and content) that you would expect coming from a little kid, so that bothered me a bit...but by about page 50, something changed and I couldn't put the book down (I read it in one evening). I found out later it is required reading for the United States Marines...and I understand why. The book is all about military strategy, loyalty, calmness in the face of adversity, and clarity during high  pressure situations. Don't want to say too much, because that will give some things away. Just know, it's fun, unexpected, and a great read. Go read it before the movie comes out!

2. Autumn in Esereth, (The Esereth Chronicles, Volume 1) by Molly Meyer-Allyn

This book was a surprise. A mixture of space (and in a way, time) travel, medieval practices, and aliens. And it's a mix that works. I sped through the last pages...only to find a cliffhanger and desperately hoping the author is already printing out the second book! Without revealing too much,  Sara finds a book, and with a flash of light, her entire life and world is changed. Finding herself in the middle of an imminent civil war, Sara must determine her role, discern between the perspectives of the warring sides, and make a choice that is brutal in its finality. The character development is vibrant at times. Balu, a young boy who befriends Sara, and Hecate, the mysterious healer, practically leap off the pages with their endearing and quirky personalities, I could honestly see them in my mind. This is a fun read that touches on some deep philosophical questions regarding human nature and our purpose. Looking forward to seeing how this story unfolds.

3. 100 Cupboards by N.D. Wilson

This book is wonderful. If you loved using your imagination as a kid, you will love this book. If you always wished you had an imagination, you will love this book. Twelve-year old Henry has to spend the summer with relatives in a house that isn't all what it seems. On his first night there, he discovers a wall filled with cupboard doors...but what are they? Or rather...where do they lead to? This book is down-right fun! I laughed out loud, remembered what it was like to be a kid on adventures, and got completely drawn into the story. The conversations between the characters are so vivid and real, I felt like I was standing by them watching their interaction. This is the first book in a three-part series and I cannot wait to start on the second one!