This Week in Summary

This past week has been… a lot of things. I’m feeling very overwhelmed physically, emotionally, and maybe even spiritually. But I wanted to share a few good things that sustained me through the week:

– attending vespers and seeing Timothy & Grace’s faces light up when they saw me walk in
– spending time to pause and begin a gratitude journal
– the genuine friendship of Timothy & Grace in a time of sincere need on my part*
– receiving a spontaneous gift from Alana that melted my heart because she had taken the time to know me**
– the peace that came with writing a letter to a former coworker in basic training

Even though there are a lot of parts of this past week that I’d love to forget, they build the context for all these moments. The love and the peace that I felt in each of these moments I wouldn’t trade for anything. So, all in all, the time was not wasted.


P.S. Perhaps some of these anecdotes could use elaboration:

* Grace texted me a few hours before they came over to my apartment for dinner and asked if they could bring anything. I decided to be assertive and ask for support; I replied that I had everything I needed for dinner, but it would really help me a lot if they could stay a little longer to pray and just hang out. And they did, no questions asked. In fact, Timothy didn’t even blink an eye when I asked him to cut a cantaloupe. I knew that serving it would take all the energy I had, so I just gave him the melon, a knife, a cutting board, and a plate. I know I smiled and laughed the most this week during those hours that they were at my apartment.

** Alana’s gift feels like the first time someone put together a set of gifts that matched me perfectly. It was a small flat rate box. I thought that she was mailing me a birthday present, but when I opened it, it was a bunch of little packages with cards for each package. This is what it contained:
– an Eeyore tank top, which said: Not Blue, Just Thoughtful (because I love Eeyore & the sentiment captures my thought entirely)
– a beautiful headband with dainty flowers
– a set of quilt holders for my quilting projects
– a postcard of a quilt with this note:

These are some little things I’ve gotten over the past couple weeks that made me think of you. I couldn’t wait to give them to you — but you still have to wait until I get there for your birthday present. It seems like so long until then!

I can’t wait until Alana comes to visit on Monday!!

Another Day, Another Comic

I’m participating in a clinical study these days for chronic fatigue syndrome, and part of it includes self-management skills. One point that the author made was that we’re often overwhelmingly stressed by the small things in life, not major life decisions like getting married.

I wasn’t sure I knew what he meant, but when I saw this comic, it all clicked. All that email asking to do mundane tasks that must be done now????? Yes, I’m taking a break from that:

why do we put ourselves under this kind of pressure?

Abigail Cashelle

Taking a momentary break…

I saw this post tonight after a really bad day. I feel really overwhelmed by things that have been happening and things that people have said. I hate feeling this way. It makes a hard life harder.

Two things stuck out to me:
1) pray for a person the way you’d like to be prayed for
2) quietly pray the Lord’s prayer: slow & out loud

Turning to the Lord changes my heart. There’s a place of peace within my being. And that’s what I want & need so much right now.



There’s something about traditional mail that’s always mesmerized me. I love writing letters and picking out the perfect card for someone particular. I can be found writing people as often as once a week, especially if they have limited access to the Internet. My grandmother, my best friend who’s working as a missionary, a former co-worker who’s in basic training… I write them all.

So when I saw this opportunity sponsored by WEGO Health, I couldn’t help being excited (even if I am supposed to be on break.) Mailing postcards? Being part of a community? Writing & reaching a bunch of people all at the same time? Sign me up!!!!

WEGO Health is compiling a set of postcards with “HealthSecret”s on them. It doesn’t matter who you are: a chronic patient, a caregiver, a friend, a medical professional, a blog stalker. Write something about health: a secret, a confession, a thought, a reflection, a fact. Send it in to WEGO Health; 180 Lincoln St, 5th floor; Boston, MA 02111.

Here’s my entry (the secret’s out…):

Australian Cooking?

Now that we’re touring Australia, I’ve discovered a whole world of Australian cooking. Tonight, I made crumpets for the first time and thought of Mary Poppins the whole time. Fortunately for me, the Australians use English units of measure, so I don’t have to sit there converting things. I am, however, learning a whole new vocabulary: bicarbonate of soda, caster sugar, etc.

To all my readers in the UK, I feel like I’m becoming more British as the days go by. First I take advantage of all the ME research (that overshadows the CFS research here in the States.) Now, I’m learning how to cook like you all.

Happy to be on an adventure (and hoping to feel a little bit better soon),

Overload: Break from Blogging?

In last talking to Dr. Leo, I realized that I’ve become buried under an onslaught of information and tasks. It seems like everyone I’ve talked to in the last few days has wondered why I haven’t gotten around to doing something they asked me to do last time we talked. And the answer always is that it got lost in the midst of everything else that I have been taking care of.

As I told Alana earlier this week, this is what my life looks like:

medical stuff, dissertation-related stuff, school politics, church stuff (x2 for 2 church groups), roommate stuff, food stuff, family stuff, project stuff, housework stuff, friend stuff, and since my brain is functioning at half capacity, it’s just WAY too much stuff!!

I think Elliot had the most useful perspective:

At this point, you might just be in a doctor / information / medicine overload. Take a step back from it all for a couple weeks! As hard as it sounds, your best treatment right now might be just to find a way to not focus on it?

TV static
Remember the days?

So I’m taking some time to just scream some static into all the drama. Well, I’m not exactly a screamer, but I’m just taking a step back and laying low from all the stuff. I’m not sure if that means I won’t be writing or not, but I’ll only write if writing is cathartic or I feel the pressing need to share some new discovery with you all.

So even if you don’t hear from me in the next few days, know that I’m still here, still in need of encouragement, and still fighting to be in me (in the midst of the drama that is called life).


We Interrupt This Drama to Bring You to Australia!!

Dr. Leo takes us to Australia where kangaroos and koalas support the chronically ill

I had an interesting appointment with Dr. Leo yesterday. Someone asked me to describe it today and two words came to mind: good and sobering. The appointment was good because we talked about a lot of things that were happening and made decisions about what to do for the next few months. I walked away feeling much more informed and in good hands.

At the same time, it was a sobering conversation. Dr. Leo asked me how things were going, and I gave him a fake smile and said that they were pretty much the same as when we last talked. He nodded his head just like Taylor did a few months ago, acknowledging my comment and pausing to recognize the gravity and tragedy of my words.

We talked through a lot of details of my situation, he asked me a lot of questions, and I explained a lot of environmental things that have been going on. We talked about school & being a young adult dealing with this type of illness. He became rather indignant of the way in which my department has treated me because it’s indirectly worsening my condition; he’s pledged to make them stop. (Always nice.)

Then he said something new, something no physician has ever said to me before. Dr. Leo told me that he didn’t want to put me on new medication as I already seem to be in a rough place. New meds definitely take time to adjust to and my body might not be in a position to handle drastic changes. Instead, he suggested that I follow a diet alteration recently developed in Australia!! The diet itself is fairly similar to the gluten-free/dairy-free regimen I’m already following and the private list of items I try to avoid. The main difference is that I need to pay more attention to the specific vegetables and fruits that I eat. Because its Australian, there are definitely things on the list that I have never heard of like dandelion roots, chicory, and paw paw. It definitely adds amusement to the whole task!! The good thing is that I’m getting to try a whole new world of flavors and textures. So I’m actually expanding my palate, which is one of my goals for this summer.

A sobering conversation but very profitable. Healing and progress are slow and not always moving forward. Answers are hard to come by. Things may not happen in a preferable order. But patience and care and a little bit of humor go a long way.


When you’re a chronic patient, what comes to mind with the word progress?

My first few years of being ill, a lot of doctors told me that the reason I was sick was because I wasn’t being proactive and responsible in seeking a diagnosis and treatment. This attitude fostered a lot of growth in me and underscored numerous intense arguments with my family. Now that I’m seeking medical care on my own, no doctor can tell me that I’m not being responsible. But the question remains: am I making progress?

Progress is defined as “forward movement in a given direction or toward a destination”.

For me, medical progress means that we (the medical team and I) are getting closer to knowing what I have and figuring out how to treat it. Of course, there’s another definition of medical progress: feeling better and stronger and able to do more stuff.

The tricky part is that we want both types of medical progress and usually they come at the same time. But for chronic patients, progress type 1 is absolutely necessary to achieve progress type 2. So even if there isn’t quantifiable progress that an outsider might be looking forward to, there is still definite and very real progress happening.

Anything living requires time to heal and to develop. With a chronic illness, time can be measured in months or even years. In the grand scheme of things, it’s amazing to think that a person can even partially recover from a debilitating illness. But in the context of school which measures itself in days and weeks, healing seems to take an eternity.

Sometimes semantics really do distinguish one thought from another. From a conversation with a friend earlier this week, I realized that what I see as much anticipated progress appears as stalemate to an outsider. That outsider assigns a different meaning to progress and then is confused when my behavior doesn’t match the assumed progress.

Thinking out loud,