Being Sick is Stressful

It just is. There’s no two ways around it.

It’s even worse because I’ve been chasing my insurance company around in circles.

I’ve also been trying to sort out medications because the one medication that helped made me really nauseous but now that I’m not taking it, all the problems that it was helping me with came rushing back!!

The brain fog makes everything hard to sort out. It’s like… uh, what are we talking about again??

Being kicked out by doctors and told by other people that if you just worked harder, everything would be better sucks too.

Having a chronic illness is stressful. And that’s how people get depression from having a chronic illness.

QED

Abigail

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Something He Said

Of course, don’t feel like you always have to be tough. If things get hard and you don’t know what to do, I’m always here for you. I want you to be strong and happy and for things to get easier so you never need me. I really, really do. And I think you’re moving in that direction. But you’re allowed to feel overwhelmed, to not be strong enough. I’ll be here for you whenever those times come.

The end of a visit with Dr. Samuel. We had talked about how I was feeling, what I was planning to do, how far I’ve come. We talked about change and transitions and uncertainty.

I started crying during the appointment. (I’ve gotten really used to tearing up in front of random people. As long as it doesn’t bother them, then I’m fine. I’ve basically stopped wearing makeup, so I don’t usually have to worry about streaks of color pouring down my face.) Anyhow, I started crying during the appointment. Since I kept talking, Dr. Samuel kept talking. But at some point he said, You know, it’s normal to cry. Transitions are hard. And scary. And it’s okay that you’re spending a lot of time in bed. As long as you’re still doing things like going to doctor’s appointments and applying for jobs and interacting with your friends, that’s fine. You don’t have to be a superhero. You’re doing very well.

So it was a good visit. Except I don’t feel confident the way Dr. Samuel does. I know I’m doing okay right now. But what about tomorrow? Or in an hour? Who’s going to help me if I get buried under all of this? And that’s when he said the above comment.

It felt good. It feel good to have permission not to always have to be strong. It felt good to know that someone had confidence in me. It felt good to know that if something went wrong (which it probably won’t), I have to someone to turn to. It felt good to have someone acknowledge how hard it is to be tough.

Abigail

Smile, it’s a bright new day

Things have been hard over here. I’m not sure I want to say more. But this painting cheered me up. I don’t think it’s affordable on a grad-student budget, but it’s pretty. And happy. And cheery. And bright. In other words, it’s perfect!!

(c) David Willardson; available at Park West Gallery for purchase
Mmmmmm I by David Willardson

Tears, Perspective

It’s been a rough season for me. I’ve been feeling really sick for the past few weeks. We don’t really understand what’s going on medically. It’s finals week for me, which means pages and pages of writing, and then some endless grading as well. I’m battling the graduate school, the ravenous lion, and all his colleagues over simply being a student in the program next term. Plus, I’m saddened by how many people have become “too busy” to spend time with me any more.

In phone conversations with at least three different people this week, I’ve heard this question: Are you okay Abigail? Are you handling this okay? Ummmm, what if I say no? What are you going to do? Tell me that life sucks sometimes? Tell me to call you another time so I can talk to your voice mail again?

Great sentiment… if it comes from someone who walks with you to to be part of the rest of your story.

The third time it was just too much. I did it, folks; I said no. Poor Bryan: he was at work several states away. What was he supposed to do? He told me not to beat myself up over it and mumbled something about saying that to his own patients, maybe knowing that it wasn’t helpful. I told him, It’s not that. It’s that I feel like people keep letting me down. They’re there for me until things get complicated or “too much” time has passed and they decide they can’t handle it any more. Then they say, goodbye. Good luck. We know you can do it. That’s hard. He repeated it back to me while he was mulling over the thought. Then his boss walked in and wanted to know why he wasn’t working. (That’s what happens when you make personal phone calls at work.) He said he would be praying and went back to work.

Somehow, it was just helpful to articulate it. That’s where a lot of the extra pain is for me. I’m disappointed. Which means that I had faith in people, and they failed me. Or I thought we were friends unconditionally. I guess that’s not what you had in mind.

It’s not that I’m being unreasonable (at least I don’t think so.) Aaron got really busy with his ordination & his family that came in town for it. Dr. Leo took an extended vacation for Thanksgiving. It’s the people who say I’ll be here when you get better or Well, I tried; you have to give me credit that really bother me.

Not a very uplifting post. But it’s what’s uppermost on my mind. It’s what kept going through my mind last night when I couldn’t sleep.

Abigail

A Response to an Update

Reading Sophie’s update, I realized that our medical journeys are very similar. Sure, we’re about five years apart. Sure, we live in different countries. There are nitpicky differences. But the bottom line is that there are a lot of similarities, and I’m pretty sure we can learn a lot from each other.

See for yourself and tell me what you think:

I’m in the same place as Sophie with regard to CBT where I’ve already done everything that you’re supposed to do with regard to chronic pain management. Like her, I’ve been to two sessions and have been really frustrated with the lack of progress that’s being made.

I joke with my doctors a lot about a “magic wand” cure. What I tell people is that no one wants a magic wand cure as much as I do. And given how much certain doctors are invested in my case, if they stumble across one, they will exercise it. And if the cure comes out of the sky, we will very quickly switch gears and move in that direction. However, we’re focused now on coping with the existing symptoms and living with the reality that I’ll probably be living with this condition for the rest of my life and even the possibility that the condition itself is cumulative.

I was just thinking today that I need to call my gastroenterologist Dr. Leo and discuss the issue that I have about eating. The thought of having an eating disorder is really scary to me (as if I haven’t already jumped the hurdles of being labeled with a ton of other things!) but if Sophie can do it, I suppose I can do it too!! 🙂 I know that I shouldn’t be suffering from malnutrition on top of everything else!

The future is really scary. Especially if you’re in school. Especially if doing everything right doesn’t lead anywhere. Especially if everyone around you doesn’t have to deal with ANY of this at all.

Two things have helped me through all of this:
1) Focusing a little bit on the present. I do know that I have today and this moment. So I want to make this moment count. Maybe, at some point, they’ll all add up. But if nothing else, I won’t reach the end of my life still waiting for my life to begin.

2) Friends. It helps a lot to have other people to lean on. Friendly faces count as well. Somehow having friends can get you through another day. Making friends with health care providers helps a lot as well. It makes me feel less vulnerable. Maybe they’ll slay the dragon if he comes out from under the exam table. Or the X-ray machine. The receptionist will definitely not add to the pile of stress I already carry.

And there are the friends who drop everything to spend the night with you when you’re really depressed. The friends who will call you to make sure you’re okay because even though you said you were, they thought that you might need someone to talk to. The friends who pray for you regardless of what has happened; you’re their friend, you need prayer — it’s that simple, no judgment. And the online friends who read your blog posts and instead of rolling their eyes at another one of your ludicrous dramas, laugh with you, cry with you, and press on together with you… because that’s what friends do.

So, there it is. A little bit about my life. A little bit about what I’m thinking about these days. A little bit about why I write about the things I write about. (Ever wonder why friends & medical folks are center stage? Now you know.)

Any suggestions from the readers? Anything you’ve always wanted to know (or are puzzled that there are TWO people in the world with the same wacky combination of life dramas)?

Peace,
Abigail

Remembering Uncle Eddie

My paternal uncle Eddie passed away a little over a week ago. His death was very unexpected and hit me pretty hard. This post is for him.


age 12: ready for a 50 mile hike!!

Nearly two years older than my dad, Eddie was the quintessential American boy. His parents moved across the United States to pursue the American dream and eventually opened a mom and pop business. At an early age, he joined the Cub Scouts and proceed to ascend through the ranks over the years. Ever athletic, he played water polo in secondary school (much to non-athletic little brother’s consternation!) As an adult, he traveled frequently, sending mementos of his trips to various family members.

Eddie: Grandma always told me how intelligent you were & how much potential you possessed. I look at the part of your life that I know and I see creativity, resourcefulness, and strength. You lived up to the valor of the name Edward in so many different ways.

As I mourn the loss of your life and the reality that we never really got to know each other, I am comforted that the trials you experienced are over. I’ll be telling my children about their uncle who refused to let overwhelming situations master him, the man who found meaning in his life in his own way. At future milestones of my own, I’ll be remembering you, my uncle Eddie, for who you were and who you intended to be.

Be at Peace

Aaron called yesterday to hear how I was doing and to remind me that the church has been praying for me. Even if I can’t attend vespers as often as I would like to, it’s nice to still be connected in spirit. But, his closing words caught me off guard. He said, Peace to you, Abigail.

Those four words mean so much to me, especially after this week. I’m reminded again and again of the Lord’s promise:

Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled; neither let it be afraid. (John 14:27)

Despite all the chaos, all the phone calls, all the uncertainty, there’s been this underlying peace that I’ve been feeling all along. As doors are closed and opened, deep in my heart, I see God’s hand at work in my life.

I’m so grateful for how far the Lord’s brought me. Several years ago before I began therapy in earnest and realized that things really could be different, I just didn’t feel anything. Love. Anger. Grief. Disappointment. Exhilaration. None of them. Part of me was buried in depression. But another part of me believed that good Christians didn’t have emotions; they were steadfast and never let emotions govern their activities. As I look back, my heart is full. As I’ve become more open to God opening up the depths of my heart, I’ve begun to experience all kinds of feelings, including the blessing of His peace. I’m not afraid of feeling any more; I know that He’s my Savior and He keeps watch over me. Through His life and His work in my being, His peace will strengthen me to endure.

May the peace of Christ be with you today.
Abigail Cashelle