Monday, May 27, 2013

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.

Thursday, May 9, 2013

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.


Sunday, May 5, 2013

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.