Novel Patient » Writing

Dreaming of Sleep

Novel Patient — Sat, 26 Feb 2011 07:37:40 +0000

I've gone through periods of being a truly epic sleeper, but lately I've been having trouble getting a good night's sleep. Insomnia is a funny thing. I have trouble getting myself to want to go to bed in the first place. Then I wake every few h Share

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Happy February 14th!

Novel Patient — Mon, 14 Feb 2011 08:01:37 +0000

Single Awareness Day (also known as Valentine's Day) is upon us! Relationships (or the lack there of) are on the mind. Relationships are hard. Romantic relationships are harder. Even for healthy people. Having a chronic illness makes it Share

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Definitions: More Than Just a Novel Patient

Novel Patient — Tue, 17 Aug 2010 19:21:57 +0000

There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects. But one of them has nothing to do with being sick. If you recall last November, I started writing a novel. It’s working title is The Alone Elevator. It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself. Here’s a brief summary:

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down. From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

As I’ve been writing this novel I’ve been thinking lately about how I define myself. So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am. But that is not how I want to be defined. I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs. There are so many other things that define me. And it occurs to me how important it is that I remember that. I am a creative thinking feeling being. I am a graphic and web designer, a scrapbooker, a novelist. I am a daughter, a sister, a friend, a child of God. I am so much more than just a “Novel Patient”.

But how do others see me? Do they see just a “sick girl” with a walker? Or do they see the real me? I think that the more I define myself as I want to be defined the more people will see the me I want them to see. If I focus on being a patient that is what will define me. But if I focus on being a Novel PERSON… well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

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Fear and Liver Failure

Novel Patient — Tue, 04 May 2010 00:25:51 +0000

It’s a terrible thing to live in fear. I make a point of not letting my fear overcome me.

When I was a very young girl a fear of guns ruled my life. I was afraid of being shot wherever I went. I never wanted to leave the house for fear of being gunned down. I was especially afraid of going to McDonald’s because I had overheard on the news that a little girl was shot and killed at one. But even as a 5 year old, I knew that my fear was irrational, and kept it a secret. I eventually conquered my fear years later when I was forced to participate in riflery at sleep-away camp. Afterward, I vowed I’d never let a fear rule my life again.

But fear still creeps up now and again. And it has certainly crept up today.

Today my doctor told me that he is concerned that if we don’t stop and reverse whatever is wrong with my liver, I will end up in liver failure. My declining liver function may be a result of either Autoimmune Pancreatitis or Autoimmune Hepatitis or both or something else entirely.

I am, frankly, terrified. But I refuse to let my fear rule me. As a child I was so embarrassed of my fear that I suffered in secret silence. But today I reached out and told all my friends the news and let them be there for me. They more than rose to the occasion, and I am so grateful for them. And now I am blogging it out. Sometimes it makes it feel so much better to get it all written down.

I may still be afraid, but it doesn’t control me. I can use coping mechanisms like these to control it instead.

Image by Jody Art via Flickr

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Patience in the Hospital

Novel Patient — Thu, 29 Apr 2010 22:19:59 +0000

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De-Stress

Novel Patient — Fri, 08 Jan 2010 04:59:16 +0000

I don't really know what to write. I've been kind of a writing funk. More precisely the stress of everything it getting to me. I'm in trouble financially, my doctors aren't currently doing anything to help me get better, and I've been doing a l Share

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High Hopes

Novel Patient — Sat, 07 Nov 2009 19:45:16 +0000

Tomorrow I am heading down out of town on a trip to see a Sjogren's specialist. My appointment is on Monday. Since it is about 3 hours away we -- my mom and I -- will be spending two nights at my Grandma's house which is in the area. I have hi Share

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Dreaming Big

Novel Patient — Thu, 15 Oct 2009 06:22:22 +0000

When you are faced everyday with a chronic illness, it is easy to find your life suddenly defined by the things you can't do which is why its why its all the more important to remember to find things you can do. It can be little things you still ca Share

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End of the Road?

Novel Patient — Sat, 26 Sep 2009 22:17:16 +0000

“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face. The realization that I may be at the end of the road isn’t easy to accept. The Rituxan didn’t work. My rheumy doesn’t want to try anything else at this time. Should I just accept that this is how my life is for the foreseeable future?

I’ve been in a wheelchair for just about a year now. Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life. Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure? Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are? Does that mean I’ve given up?

But there is a glimmer of hope. My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome. I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work. But I’m kind of terrified that I’m just setting myself up for more disappointment.

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Kris commented on The Grieving Process of Chronic Illness Thank you for writing this! Today I was looking for support on this topic- I was diagnosed with Myas
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Visible

Novel Patient — Mon, 14 Sep 2009 21:33:02 +0000

Today is the first day of National Invisible Chronic Illness Awareness Week, and it has me thinking about thinking about both the visible and invisible aspects of my illnesses. Nearly a year ago now my invisible illnesses became a lot more visibl Share

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