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 December, January, 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.

Summation

Stripped

Red, raw, bleeding

Endless flowing tears and pain unceasing

Aching, groaning, ripping, tearing

Floundering...flailing...

crawling, grasping

broken, arms thrown, surrender

Waiting

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.

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 me...it'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! 

Wakeboarding in PA!

At the beginning of July, I went on vacation with a group of friends who also happen to be my coworkers. Our joint vacation planning started one day while sitting in our cubes...I was just about to go to PA (or just got back...can't remember) and my cubemate, Cory, and I started talking about all the awesome Amish/PA food in the area where I visited (my friends live about 20 minutes from the town Cory grew up in). My other cubemate, Pooja, decided that she wanted to try Amish food...and then Cory mentioned that he and his wife were going to PA in the summer for vacation and we should all come up and go wakeboarding at his dad's place on the river.

So our wakeboarding in PA trip was born.

We all had such a blast on the river and doing some touristy sightseeing in a small town nearby, Lititz.

Apparently Lititz was voted "America's Coolest Small Town." It was pretty cool...

The theme of our Litiz day was food: old-school candy, pretzel, wine, beer, chocolate, and then finishing up with a stop at my favorite Amish restaurant, Katie's Kitchen, in Strausburg for cheeseburger soup and apple dumplings. We definitely need the time on the water to work all of that food off! :)

There was a ton of laughter...face plants in the water as Cory and his friend Tim showed amazing patience and teaching skills as we all tried to wakeboard. Wakeboarding is like water-skiing except with one board...kinda like snowboarding on water while being pulled by a boat. After being uber impressed with  Cory and Tim's somersaults and flips, we all struggled just to stand up for a few seconds at time, it's waaay harder than it looks! Lisa, Purav, and Erin rocked it and were able to stand and be pulled for a long time!

I.loved.it.

I wasn't able to get fully "up"...I preferred the "crouching" position ;-) and only lasted seconds before crashing (spectacularly at times...on my head), but I did get out of the water, which the guys were saying is the hardest part. I really enjoy water sports and there are some wakeboarding parks in the Houston area...we've all been talking about going there to get better at it. I really want to standup for a bit :)

The River Gang :)

It was such a fun trip!

Creepy crawlies

This is a random post, but my experience last night made me giggle, so I figured I would share it with you all. :)

Anyone ever have bug dreams? Like dreams where bugs are attacking them or crawling on them or anything like that?

I had forgotten my history of spider dreams until last night. I woke up convinced that a giant spider had just descended onto my pillows. My reaction was to scoot under the covers to the end of the bed and crawl out and run to turn on the lights. My two cats stared squintly at me as I rustled the covers around, my heart-pounding, pretty sure it was just a dream but not completely convinced. There was no ginormous spider of course. But the dream reminded me of a funny moment from my last year in college.

I shared a townhouse with my bestie, her sister, Katrina, and her brother, Anthony. I woke up, dreaming that a momma spider had her babies on the ceiling, which then all fell down onto my bed. I did a heebie-jeebie dance to brush them off of me as I ran to the lightswitch and flung open my bedroom door. Anthony and Katrina looked up from their video game playing as I half screeched- half gasped "there are spiders in my bed!" Bless their hearts, they both came into my room and helped me rustle the covers to search for the culprits. Talk about good roomies :).

I had several more spider dreams in that townhouse, all of them resulting in a panicked rush to the lightswitch and rustling of covers to make sure it was really a dream (seriously, these spider dreams are very real!). After a ten-year hiatus, the spider dreams are back.

Blah. Spiders.

Feel free to comment with your bug dream experiences :)

The Therapy Room

At the end of every month, I take a half day off of work and head to the Houston medical center and my rheumatologist's office, where a room full of recliners, pillows, warm blankets, and IV poles awaits me. My infusion nurse, Jessie, takes my weight, blood pressure, and temperature (my meds are calculated according to my weight and if my temperature is too high, it could be dangerous for me to get meds since the meds suppress my immune system even further). I pick a recliner to lounge in and Jessie starts the twenty minute process to dissolve my meds in some solution. My IV is started and the very slow drip starts. We had to slow the drip down about four months ago because my infusions were starting to hurt. My veins have built up scar tissue from the number of sticks and IVs, and infusions can be pretty uncomfortable if the drip rate is too fast. Thankfully, a slower drip rate has made the infusions pretty much painless. But, the slow drip rate means sitting in that recliner for three hours as the biological cell-killing meds drip into my veins.


All around the room are other infusion patients, at various stages of their infusion, reading books, napping, and usually, chatting with other patients.

Many of us are on the same monthly schedule, so there are familiar faces, lives lived over the past month to catch up on and ample time to commiserate, share, and encourage one another in the health trials we are all walking through.

I've talked with a woman in her eighties, all dolled out in flashy bling, who has rheumatoid arthritis that has stolen away her ability to play her beloved piano during the late afternoons when her loneliness is the worst. We talked about other things that she might be able to try when the sun started its descent that would still bring distraction and memories of happier times.

I've spoken with a man in his early forties with neural sarcoidosis, who recently had a port installed (a semi-permanent IV near the collarbone to allow those who need frequent needle sticks to save their veins). We talked about our mutual love of travel, although he was now confined to the forty-eight states due to the complications of his diseas. His envy that I was still working was apparent and saddening...his disease had debilitated him to the point of not being able to function at work, and he spoke of all the friends he had lost, they didn't understand why he had to cancel plans so often, or why he wouldn't hang out like he used. "It's not that I wouldn't, it's just that I couldn't, or can't" he stated sadly, "you know how it is." I hesitated at first, not wanting to rub salt into a wound, but decided to press ahead, "well, I do know the frustration of having to constantly cancel plans because the Disease decides to mess up your plans, but I've been blessed with incredibly understanding and curious friends and family. I'm thankful for that." He smiled, again sadly, "wow, you're lucky." He paused for a moment, then starting telling me about his amazing wife, how she supports and sticks with him through the ups and downs. "Yeah, I'm lucky to have her." You are blessed sir, very blessed.

Last month, a woman in her late thirties hobbled slowly into the room and painfully lowered herself into her recliner. "Rough day?" one of the patients asked her. Nodding slowly, eyes filling with tears, she uncorked the last month of pain and suffering, sharing with the only people who can truly understand her frustration, discomfort, and at times, hopelessness. Not missing a beat, every single person in that room started offering suggestions, different pain meds that have worked for them, diet changes, specialist recommendations. She pulled a notebook out of her purse and started scribbling down the information that was flooding her way. She looked up and smiled for the first time since walking in the room. "Thank you all so much. I love coming here, because you all understand what this is like. It's like group therapy in this room!" We all laughed.

My infusion is tomorrow and I'm nursing swollen fingers, ankle, shoulder, and hip joints right now, taking tylenol to keep my fever down and thinking about who I will see tomorrow at my appointment. My infusion buddy Candace moved her appointment time so that she would start hers at the same time as me (she usually comes in at the tail end of mine). She has spondyloarthropathy (an autoimmune disease that affects the spine), is a preschool director at a local church, and has one son in the Navy and the other at Texas A&M. She has a Texas drawl and is always smiling and telling everyone she is a troublemaker (this woman has had more leaking issues with her IVs than anyone I've seen :) ). I'm looking forward to catching up with her.

Infusions have become more than just getting relief from the lupus symptoms that creep back in as the previous infusion wears off. It's a time to rest, sit, visit, and reflect on all that I do have in my life, the blessings, the small things I can be thankful for, and to be able to share, as opportunities come up and people ask, what He has done in my life. I walk away every month with a list of new prayer requests to pray for, to take my mind off of myself, and intercede on the behalf of others. And for me, that is the real therapy in that room.

Four

Plus four, minus four

Two months to creep up

Four days to plummet down

Hope sags

No rest, constant alertness

Procrastination is not a word

Carpe diem or nothing

No margin for error

Just once to be normal

The rope so thin, dare not stray

Perfection desired but humanness wins

Just be content. Content. CONTENT.

Frail flesh, strong heart

Jaw set, the thorn in

Press on, press on

By grace alone, by Him alone

I see a roadblock, but He sees the whole race.

Arlington, 7, China, running, women's ministry

The post title summarizes the last slew of books I've recently read :)

On Hallowed Ground: The Story of Arlington National Cemetery by Robert M. Poole

I bought this book for Kindle off of the "Books under $3.99" about a year ago. This book was FANTASTIC. When I visited Washington DC (er...9 years ago now :) ), Arlington Cemetry was one of my favorite places. Probably weird to say that about a cemetery, but I loved the history, thought, care, and precision reflected throughout the grounds. Robert M. Poole does an amazing job of telling the story of Arlington: how it went from being Robert E. Lee's personal property to a cemetery out of desperation to rid DC of an overabundance of Civil War dead, to how each of the Unknown Soldiers for each war were selected, how the burial of John F. Kennedy dramatically increased the annual visitors to Arlington, to how the Pentagon almost ended up being on part of Arlington. Over 150 years of history are told in a storytelling voice that makes you forget you are learning history and instead feeling like Arlington itself is a living, breathing character. Definitely worth a read if you like history or military history.

7: An Experimental Mutiny Against Excess by Jen Hatmaker

I cannot even begin to tell you how many times I laughed out loud reading this book. My friend Christina told me I HAD to read this...and I am so glad I did...and now I say, you HAVE to read this. Jen Hatmaker lives in Austin and was convicted that there were some areas in her life where there was just TOO much of stuff. So she decided to tackle seven areas that were the most troublesome. As a foodie, she thought too much about food, ate too much, loved food too much. So she picked seven foods and ate only those for a month. The next month, clothes was the area (327 items in her closet). She picked seven and only wore those for a month. So on and so forth through all seven of the areas. Ms. Hatmaker journals throughout each month, documenting her thoughts, her experiences, and how others react to and support her...eccentric plan of 7. She is outrageously funny, honest, and real. You can imagine catching up with her over a cup of coffee. She states clearly at the beginning of the book that she didn't write it to make anyone feel guilty or to show how amazingly disciplined she is (she isn't she has bumps along the way), but warns she can't be blamed if you are also convicted about excesses in your life if you read it :). Love this book. Ms Hatmaker isn't just funny, but poignant, deep, and serious about why she is tackling these areas of excess and what she learns through each month. Loved how it made think about things that I've never spent much time pondering. Great read, challenging content. I think you will enjoy it.

The Little Woman by Gladys Aylward

After being introduced to Gladys in "Faithful Women and their Extraordinary God," I realized I wanted to read more details of her life and story. Called to China, with little education, no formal training, hardly any money, and no knowledge of the Chinese language, Gladys' journey to Yangcheng, China in the early 1930s is harrowing, inspiring, and a little bit crazy :). It also clearly shows that when the Lord wants someone somewhere, heaven and Earth are moved to make it happen. Her boldness, trust, faith and honesty as she lives in China during war, famine, and the start of the Communist regime, speak clearly through the pages, written in a simple (not simple-dumb, just every day honest speaking) voice. An encouraging read on trusting God even in the most seemingly impossible situations.

Running for My Life by Lopez Lomong

My friend Brian is running the Hood to Coast relay race this August to raise money for Lopez Lomong's cause, 4 South Sudan. As part of his fundraising, he sent out a copy of Lopez's book, with instructions to read it and pass it along to someone else. Lopez Lomong is one of the Lost Boys of Sudan. Stolen from his parents when he was six years old, his journey to escape from those who tried to force him to become a child soldier, survival in a refugee camp, and finally his adoption at age 16 into an American family, is eye-opening, touching, and real. You may remember Lopez as the US flag bearer in the Opening Ceremonies of the 2008 Summer Olympics.  Yup, Lopez went from being a Lost Boy of Sudan to an Olympic athlete and his story and heart for Sudan are inspiring and take-action provoking. A great story of struggle, survival, redemption, and the desire to pay it forward.

Women's Ministry in the Local Church by Ligon Duncan and Susan Hunt

My pastor asked me to read this as I am currently praying about this topic (women's ministry) and how I might be able to serve in my church in this area. Exciting and scary at the same time...eek. I really enjoyed this book because to be honest, not really knowing what women's ministry is about (having never been involved in a women's program before), I was thinking that women's ministry was...fluffy. Let's get together and eat little cookies and drink tea and..talk? I dunno, that's just the imagine I had in my head. I am silly, I know. Anyhow, this book talked about how women's ministry is about digging deep into the Bible, studying, understanding biblical womanhood and how this impacts our daily lives, both at home and in the church family. It's anything but fluffy. And that's what I am desiring...for women who are busy with families, careers, the normal daily stresses to be able to step back and spend some time studying, growing, encouraging one another, and growing to know and love God more deeply together, not as a separate entity from the church, but as part of the church. I've got about 48.2 bazillion ideas right now...continuing to pray through the end of May before meeting with my pastors again to discuss how this may (or may not) unfold.