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.

Rediscovering reading

Although I consider myself an avid reader, I've found that I go through "extreme" phases of reading: from reading almost non-stop to taking months to labor through one book (as my book club partner has discovered :) ). After a several months long dry spell, the reading non-stop bug has bit again and I am thoroughly enjoying it!

Till We Have Faces by C.S. Lewis

My friend Leslie and I started a book club...it's just the two of us right now, but we are enjoying it. This was the first book that we tackled and I was thrilled because it had been on my list for awhile. It's C.S. Lewis' retelling of Cupid and Psyche's story (Greek mythology) told from the perspective of Psyche's sister, Orual. Amazing writing, plot, character development. The book is broken into two parts and the second was challenging - I read it twice to try and figure out exactly what was going on (it's hard to discern if Orual is dreaming or really experiencing the situations she describes). Definitely enjoyed this one.

The Brothers Karamazov by Fyodor Dostoevsky

This was the second book that Leslie and I tackled. Almost 900 pages of Russian literature. One of my favorite books is Crime and Punishment (also by Dostoevsky) so I was excited to start another of his that has been collecting dust on my "to read" stack. As with most of the Russian literature I have read Dostoevsky, Tolstoy, Solzhenitsyn), the story isn't limited to the plot, but each of the characters expounding on religion, politics, and the state of society. The plot centers around three brothers, their issues with their father, each other, and murder. It provides a glimpse into what life what like during Dostoevsky's time and encourages the reader to ponder society then and now. The characters are over-the-top dramatic and I found myself wanting to smack them upside the head and tell them to get a hold of themselves :). They are well-developed, and I found myself, liking, despising, caring, and relating to several of them, but the drama was a bit too much for me. The length of the book wasn't too intimidating, since Dostoevsky is a talented story-teller and not too many parts drag, but I much prefer Crime and Punishment.

Faithful Women and their Extraordinary God by Noel Piper

I cannot say enough good things about this book. It's a collection of mini-biographies of women missionaries through the years, their struggles, and how the Lord provided above and beyond anything they could imagine and in some of the most dire and dangerous situations. The gut-punch quote of this book from Mrs. Piper: " I ask myself and you: what is it that keeps us from venturing into something that God has been putting in front of us? What is it that causes us to say "I can't possibly do that?" What am I afraid of? What do I lack? What are my weaknesses?...If we think we can't do what God is asking us to do, we're right. But God can." An inspirational, thought-proking, and spirit-lifting reminder of the sovereignty of God.

The Maze Runner Trilogy (The Maze Runner, The Scorch Trials, The Death Cure) by James Dashner

I literally read one of these books per day - I absolutely flew through them thanks to Mr. Dashner's amazing ability to make one turn the pages at lightning speed with a complicated, layered, and twisting plot and mysterious and believable characters. Along the lines of "The Hunger Games" and "Divergent", this is another young adult Dystopian society series. Out of the three series, I've enjoyed "Divergent" the most and his one probably ties with "The Hunger Games" because of the ending. I appreciate authors who can make those tough plot decisions and take a risk. The Maze Runner trilogy is more gruesome and scary than the other trilogies - I believe because of the content matter (a devastating disease is involved) and possibly because it's written by a man and the main character is male, just a different perspective than the other two series. I would read this at night and actually found myself jumping when the house creaked because I was in an intense and disturbing part of the book :). These are a great, fun, and quick read...and apparently a 4th book, a prequel, is in the works. Woot.

Counsel from the Cross by Elyse Fitzpatrick and Dennis E. Johnson

I picked this up at a conference last year to better educate myself on counseling others, as I was working with a couple of friends who were in challenging situations that were very much outside my realm of experience and ending up finding myself being counseled by this book! The emphasis on this book is bringing the focus of of a situation back to the cross and how it relates to Christ and where that person is in his/her relationship to Him. The importance of bringing things back to the Cross is stated clearly in this quote from the book: "We need to hear it (the gospel) again because if we have forgotten His work on our behalf, it will skew the way we think of Him, the way we think of ourselves, and the way we think of others." Highly recommend this book to help with counseling others and/or for yourself. 

Filling out the house

Even though I've been in my house for three years now (!!!), it is definitely still a work in progress. I like adding things slowly and getting a feel for what I want in certain spaces. I've been happy with the results thus far, so I figure I will stick with this pace.

The living room needed something else...and I stumbled upon an IKEA hack of the VITTJSO glass and metal shelves. They are a black-brown and I wanted something more industrial looking and I loved what people where doing to them with just spray paint.

I chose a hammered silver spray paint. Two cans later...some awesome shelves that I think really help to fill up the room more.

Pre-spray paint (ignore my seriously messy garage...cleaning/organizing it is on this year's spring cleaning list)

All hammered-silvery!

See? Much more filled out now. :)

I've also been searching for about a year for a mid-century style armchair for my bedroom. I wanted a reading nook and I was quite picky about the chair...I was going for a certain look and needed to be able to sit in it with my legs/feet curled up into it (um, that's how I like to read :) ). After scouring craigslist for months, and other furniture websites...I began to think that it was a lost cause...until my friends and I happened to go to IKEA and I saw the STRANDMON chair and ottoman. ANd it was comfy! And I could curl up in it! And so, it is now part of my reading nook, along with my craigslist lamp and mid-century table :) It's been getting a LOT of use.

So cozy...

Duct tape rocks!

My sewing skills are extremely limited. As in, I can never remember how to even thread the machine that I have. At most, I've sewn about 5 straight-ish lines in my life. That being said, I was extremely excited when my favorite DIY blog posted about making your own faux roman shades WITHOUT sewing. I've been wanted to do roman shades in the breakfast nook and kitchen but was intimidated by the need for sewing.

This is where the duct tape comes in.

The DIY blog used some fancy fabric-y white tape. I used good-old-tried-and-true duct tape.

Faux roman shades assembled with duct tape, pins, and no-sew-iron-hem tape. 

Duct tape rocks.

I searched for this fabric for almost two years. It's "Cecilia" from IKEA and they were always out of stock when I went there. I finally snagged 4 yards, measured, and hemmed using iron-on hemming tape.

My blinds are vinyl and at the top, there is a wider vinyl piece that hides where the blinds are attached to the window frame. I literally just duct taped the fabric to the vinyl piece. This is from where the faux roman shade will hang.

I then started pinning 4-inch folds to get the "roman" look. This took a bit to get everything even and lined up.

Mid-folding and pinning

Voila! Faux roman shades! You can't see the tape, you can't see the pins. Amazing.

I love them. And duct tape.

Um, chewing is awesome.

Yes folks, I have a new appreciation for my teeth and jaw and the act of chewing one's food. After being on a liquid/mushy food diet for a little over three months, my stomach has been able to tolerate small amounts of solid foods for the past two weeks. Chewing your food rocks.

After some major issues during my Italy trip, I went through another series of tests and poking and prodding in December and January. Eating had become so painful that I couldn't keep anything solid down. So I put myself on a liquid/pureed food diet with my doc's support. Pureed foods even over Christmas. You should have seen the look on my family's face as I blended the Christmas ham with other side dishes into a color that should not be eaten and then proceed to slurp it down. It actually was tasty. Truly. As long as you didn't look at it :).

The last gastroparesis test was normal, a good thing, but definitely not helpful in figuring out why I am having such trouble eating. Several other tests were fairly normal...no "smoking guns" as to what the culprit is. My GI doc and rheumo doc are conversing and we've done some additional tests for rarer auto-immune diseases. All normal thus far. It never ceases to amaze me what we can do with medical technology and...how much more I wish we could do with it. Seriously, someone needs to invent the tricorder. Now please. But I do appreciate how my docs think outside the box and work together. It is such a blessing and help.

I'm happy to report that January and February were, in general, good months in the sense that things have stabilized and been consistent. My pain levels are tolerable. Even if I sleep through my 2:30am "take your pain med alarm," and take the med hours later, it is able to catch up with the pain after about 4 hours, which was not the case a few months ago when a missed pain med dose usually meant the entire day in bed, so that is a huge improvement.

My lupus flared a few weeks ago. It was my first flare since starting the new medicine in June and it was pretty rough. I couldn't walk much due to the joint inflammation and my stomach pain got pretty bad too. The nurse at the rheumo doc's office probably thought I was crazy because I was so excited that both my stomach and my joints started hurting at the same time...but it's a really good data point to support my GI doc's theory that my GI stuff is all auto-immune related. A healthy dose of steroids stopped the flare after just two doses! And the stomach pain lessened as well. Another data point! And a huge victory that I was responsive to the steroids...it's been touch and go with how well they have been working.

My joints in general have been acting up more...most likely due to weaning myself off of one med (with the doc's approval of course). I'm back on it again (bummer), but if that's what I need right now, then I'll be a big girl and swallow my pills. Still waiting to see if the joints will settle down, but they are much much better than they were during the flare.

Still, my biggest excitement is eating solid food again. Small portions and not at every meal. But oh my goodness it is awesome to to chew again!

Sometimes I feel like I'm turning into that woman - the one who only ever talks about her latest ailment.   I know I do talk about it quite a bit, but only because it's a big part of my life right now. Lord willing, that won't always be the case, or I'll learn how to balance things better, but I am so thankful to my friends and family that let me talk it out and listen and support, encourage, and pray for me. I have to make a lot of decisions sometimes at the doctor's office or over the phone with the insurance company, and it's nice to be able to share with someone the trades I had to make, or the concerns I have. I have so many wonderful listening ears and caring hearts in my life. And I have the Lord, who is with me always, even when it's just me sitting in the room waiting for the doctor to come in.

Thank you Lord, for your provision, sustaining grace in my life, patience with my ups and downs, and mercies. And for the quiet stillness that you allow me to find when everything else seems to be falling apart.

"He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, "My refuge and my fortress, my God, in whom I trust" - Psalm 91:1-2