Just a quick post…

…to say that I’ve been living in bed basically. I’ve been really exhausted and in a ton of pain. My goal is to get out of the apartment almost every day and to spend at least one hour doing something productive. Seeing as how “productive” includes things like taking out the trash and doing the laundry, this blog is being neglected a bit. Hopefully, once I get a little bit more energy, I can tell you about all the things going through my head.


One thing that I’ve appreciated about my doctors in the past week is that they take me seriously. I talk to them in person and over the phone about some of the crazy symptoms that I’m experiencing and how I can’t even describe what they are. Sometimes they can be scary, and I’m never sure whether they are really noteworthy. Both Drs. Mark and Leo took me seriously. They don’t know what’s wrong. They are not familiar with the symptoms that I described. But they’re committed to helping me to find an answer and to navigate the maze that is the medical world. I know it’s hard for them because they feel vulnerable and frustrated. But I appreciate that they take the time to hear my concerns and to get to know that I’m not a complainer. I’m honored that they’re willing to work together with me to devise a plan of treatment. In the midst of much negativity and indifference, their heart comforts me. So even when they feel they haven’t done anything, they’ve actually started the work of healing, in my heart, and that’s really the work of a doctor: to heal.

Abigail Cashelle

Steadfast, Enduring, Long-Suffering

Lying in bed last night, I realized something. I like things to happen quickly. I’m content to wait, and I’m willing to exercise my fair share of patience. But I realized that the God who is my Father is not only patient. He’s steadfast, He’s enduring, and He’s long-suffering. He is so much more than patient.


Steadfast: stable, firmly fixed, unchanging.
…He steadfastly set His face to go up to Jerusalem. Luke 9:51


Enduring: remaining in existence for a long time, often through trial
Looking away unto Jesus… who for the joy set before Him endured the cross, despising the shame…. Hebrews 12:2
…The grass witherith, and the flower thereof falleth away: But the word of the Lord endureth forever…. 1 Peter 1: 24-25, quoting Psalm 102:11-12


Long-suffering: bearing provocations for a long time, patiently enduring lasting difficulties and hardship
The Lord… is long-suffering toward you, not intending that any perish but that all advance to repentance. 2 Peter 3:9
…the long-suffering of God waited int he days of Noah, while the ark was being prepared…; 1 Peter 3:20


I stand in awe of the Father I have. I’m realizing that it’s not just His love that endures forever or that of His days there is no end. He is the definition of steadfastness, endurance, and long-suffering.

Humbled,
Abigail

The Little Things

B5748The past few days have been really hard. I’m so tired that I could lie in bed all day and all night. It’s just that it gets boring, and I feel like I’m wasting my life away. So, in between, I’ve been working on a sewing project.

But mostly, I’ve been lying in bed. Eating has become an afterthought, mostly because I ate almost all my prepared food during finals. It takes more energy than I have right now to cook, and by the time I cook anything, I’m too nauseous and exhausted to even think about eating it. That’s when the little things really make all the difference.

My church parents, Joseph and Erica, had me over for dinner yesterday and today. Well, technically, I invited myself over yesterday. And today was a dinner plus meeting, but I only stayed for the dinner part. Joseph and Erica were just so happy to see me. It didn’t matter to them that I only visited them because I knew I had to eat something. In fact, Erica kept asking me to take food home with me.

Some days, there isn’t a whole lot that I can do. The whole day just seems like a blur. But I realize, that without little things like meals and friends, I’d be much worse off.

Ever grateful,

Abigail

Act One, Scene Three

If you’ve been following the drama that is my life, you’ll notice that we skipped Act One, Scene Two. Let me quickly summarize it:

Title: The Ravenous Lion Strikes Again, Or, The Absent-minded Professor
Setting: A university building.
Synopsis: Student knocks on professor’s door. After no response, she calls his second office. Finds out that even though the meeting was scheduled for the office she’s at, he wants her to come to his other office. Student sighs & throws the ravenous lion a biscuit before quickly exiting the stage.

Sufficient?


Moving forward…

Act One, Scene Three

Setting: similar physician’s office as scene one just bigger. More open space. Patient chair should be large enough to seat an XXXXL person. When scene opens, patient is on exam table; doctor is looking at patient’s eye through fancy medical device.

Doctor (incoherent): talking to patient about symptoms

Doctor: Hmmmmm. I really wish I knew what was wrong. We’ve already tried all the obvious things, and you’ve seen the specialist I’ve referred you to. I can refer you to another specialist for a second opinion or to a different type of specialist. (pause). I’m sorry. I don’t know what’s wrong. Even though there’s nothing that I can tell that’s wrong, I know that it’s bothering you, so we need to do something about it.

Patient: Thank you.

Doctor (clearly caught off guard): For what? (pause) For listening?

As curtain closes, patient & doctor continue conversation (incoherent).

This is how my appointment with Dr. Mark played out this morning. How should I respond to Dr. Mark? How can I express how much it means to have a professional confirm the validity of my symptoms? What about the fact that he’s willing to be proactive and advocate for me even though he feels helpless and will have to venture into new territory? Last time, he mentioned that he wishes that he could really be superdoctor and solve whatever problem I have, but I never present with anything “normal”. How do I explain that this same scenario plays out with almost every physician I see and no one has ever responded this way? I value and commend the courage he has to admit his limitations and to not leave me in pain by the wayside. Other doctors have refused to take me as a patient or even suggested that another might have more experience; no one has ever risen up to the challenge of helping me navigate the medical system even though we both know he’s flying blind.

The chronic patient knows that his only option is to keep trying and to keep seeking advice; otherwise, symptoms only degenerate. It’s so rare that anyone, friend, relative, or doctor, steps up to the task of helping through the discouraging process of sifting through mounds of information. For me, Dr. Mark is a great doctor, not just because he knows how to treat his patients or because he’s willing to listen to their stories, but even more because he’s committed to walking alongside them as they strive for better health.

Ever grateful,
Abigail Cashelle

New Page

I’ve moved a few things around and added some more information to some of the permanent pages. The most important addition is that I’ve created a page with a list of “you know you have a chronic illness when…”. In the drama that is my life, I often find myself in scenarios that I know only would happen to a chronic patient. So I’ve created an evolving list. Feel free to comment or email me at abigail.cashelle at gmail dot com if you’d like to add to the list.

Abigail

Just a few words

DHANAK (Rainbow)A simple sentence. A straightforward thought. Sometimes a little means a lot.

He said, Sometimes you do have to listen to your body.

She said, You could complete your Ph.D. with your eyes closed.

In just a few words. Validation. Confirmation. Support. Friendship.

They meant, You work really hard and you do need to take a break when your body is exhausted. That’s realistic and normal. There’s no need to apologize for logical behavior.

AND I know there’s a lot of pressure in graduate school, and people seem to be saying some really mean things. But, Abigail, you have an amazing capacity. The fact that you can accomplish so much with so little energy demonstrates your incredible potential. Believe in it. Run with it. It’ll take you far. Don’t let petty comments stop you.

It’s like the rain has parted and a rainbow fills the sky. It’s those little words that encourage me each step of the way.

Blessed and thankful,
Abigail

Moved by a Prayer

Today’s collect:

O God, you have prepared for those who love you such good things as surpass our understanding: Pour into our hearts such love towards you, that we, loving you in all things and above all things, may obtain your promises, which exceed all that we can desire; through Jesus Christ our Lord, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen.

For Good Times & Bad Times…

StackedI wrote a stack of thank you for your sympathy notes today. One of my friends lost her mother last month, and she needed some help writing notes to all the people who attended the memorial service & sent cards and such. I wound up writing the generic cards to people who had a simple connection to the family while my friend Melissa wrote to closer friends.

It was a simple task. It only took one hour out of my day. But the simple task of helping someone else, easing a friend’s burden, made all the difference. I felt so much better.

I love to write. I’m organized. I can get things done if I set my mind to it. Being able to share that with someone else, especially when it’s hard for them, meant so much.

I love that friendship always goes both ways. When you are a friend to someone else, you are cherished too. Being needed feels good, being a blessing feels better.

Grateful for the little moments every day,

Abigail

A Ravenous Lion

At the end of April, I joked with Dr. Samuel that I was telling my classmates that I wasn’t sure if I was returning for the fall term. I was tired of people asking me what my plans were and if I was dong such and such, so I just told them that I had no definite plans regarding the fall. Dr. Samuel looked a little horrified and said to me, But you are coming back, right? I told him that it was the plan. But beside that, I didn’t have any further details. I hadn’t even registered for class.

Since then, I’ve registered for class, but the thought keeps racing through my head these days. I’m really not sure what to do. I hate that having a chronic illness means that your future is really uncertain and even more that it’s not in your control.

My end-of-term meeting with my adviser included this interesting observation: we don’t think you’re sufficiently present in the program. It’s a fair assessment, but I don’t really know what to do about it. Plus, this is the same adviser who told me earlier this year that it’s not sufficient to work hard and make good grades. (What more does he want? For me to have the potential to succeed in the program (or something like that).)

I have three things in my life right now: (1) medical stuff, (2) church stuff, and (3) school stuff, pretty much in that order. I really wish I could spend more time on (2) and (3), but I simply don’t have the energy. I’m not willing to overextend much either because that robs energy from multiple days to come. Plus, of course, said adviser keeps asking if I’m making concrete medical progress. I am, but not in a way that gives me more energy. I am working very, very hard and pushing myself as much as possible. I have very high grades because I produce high quality work. It’s discouraging to be told over and over again that that isn’t enough.

All in all, this means that I’m not sure about going back for the fall term. I really want to & I am getting what I want out of the program. But all the pressure really isn’t helping. I’m really scared, and I wish I had a better option.

Lion
Part of me feels that the situation is akin to trying to satiate a ravenous lion. No matter what I do, the lion will still get hungry. If I feed him a little, his stomach won’t be full and he’ll want more. If I feed him a lot, his capacity will increase and he’ll want more. Rather than run around the world trying to collect every single particle of food I can, maybe a better strategy is to ration food & feed the lion periodically. That way, he will have enough food to survive, and he won’t try to eat me when I feed him. And, that way, I can meet my goal of feeding the lion without expending all my resources trying to satiate a ravenous lion who will always be hungry for more.

The problem is this: great example but how does this translate to real life????

Confused & in need of advice,
Abigail