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

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

Though I am a Novel Patient, patience isn’t my strong suit.  But patience is what is required of me right now.

My kidney infection has triggered a flare of my Autoimmune Pancreatitis.  I’ve completely lost my appetite and am having severe upper abdominal pain that bores through to my back.  Luckily I am at the hospital with all my specialists including my Pancreatic specialist.  In terms of treatment, my doctors are really afraid to give me more Prednisone (a steroid) while I am still fighting this infection.  Plus they don’t want to undo my progress in tapering the Prednisone.  So the treatment is to keep me completely off anything by mouth – no food or even water – for several days until this hopefully calms itself down again.

So they are keeping me here through the weekend, and I get to practice being patient.

I am plain tired of it all though.  I am tired of being in the hospital so often that it becomes so commonplace to my family that they hardly bat an eye.  I am tired of having IVs and PICC lines hanging out of my arm and being covered with bruises from botched attempts at them.  I am tired of being woken up in the middle of the night to get my vitals checked.  I’m tired of all the medications and the side effects.  (A new fun one from the IV antibiotic is blurred vision.)  I’m tired of being bored and lonely and alone in the hospital.  I am tired of being so tired.

I wrote a poem just now:

In The Hospital

In the hospital
Knowing only pain
And loneliness
Poked and prodded
Woken in the night
Woken in to a nightmare
But this is no nightmare
This is my life
So I search
For a beacon of hope
For a way to get through
And make this trial a tool
To grow and evolve
Past the loneliness
And past the pain
Poking and prodding
My soul into change
Though I dream
And I hope
For health
I cannot wait
So one day at a time
In the hospital

On the upside, I get to take a shower tomorrow.  A REAL shower!!!  I can’t explain how much I’m looking forward to that!

Also my church has been amazing!  They’ve been calling and texting and most importantly visiting me.  It’s been awesome to have such a source of support for the first time in my life!  Their visits have broken up the monotony and made it so much easier to be patient.

And patient I must be – a novelly patient patient.

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 lot of “being there” for my friends and family which I am more than happy to do – it’s just that its emotionally draining.

It’s so important to stay stress free when you have any chronic illness but especially one that’s autoimmune related.  High levels of stress lead to flareups of my illness.

Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don’t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually The Princess Bride when I’m not feeling well), I talk to a friend or my sister about what’s bothering me, I scrapbook, or I force myself to write in this blog.  I’m feeling a little better already.

What do you do to de-stress when the road gets too bumpy?

A page from my Peace Book.

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 high hopes that he will be able to provide me with some new treatment options.  At the same time I am nervous about getting my hopes up too high.  I have been disappointed by doctors many times before.

It can be hard to maintain hope when living with a chronic illness especially when you are told by your doctor that you are basically out of treatment options.  But the alternative — falling into despair — is much much worse.  So I choose to maintain my high hopes knowing full well that sometimes I will be disappointed.  That’s okay.  Disappointment is a part of life.  I realized a long time ago that you have to take the good with the bad.

On a different note… Sometimes I surprise even myself with what I can do if I set my mind to do it.  Since the start of the month I have been writing up a storm on novel for National Novel Writing Month or NaNoWriMo.  As of this writing, I am up to 10,701 words which puts me about 700 words ahead of schedule!  You can go to my NaNoWriMo Profile page to continue to follow my progress and to read a synopsis and excerpt from my novel.  Since I started doing creative writing again, I’ve been on sort of a writers high.  I don’t remember the last time I was in such a great mood for days at a time!

I’ve also stood up another time for a another whole minute.  I haven’t been able to do it as often as I would like, but the fact that I’m doing it at all makes me very happy.

I think hope is self-perpetuating.  Hope gives you the strength to reach beyond what you think you can do which in turn gives you more hope.  And all these things give me hope for a good today and a better tomorrow.