Novel Patient » Writing http://novelpatient.com Mon, 12 Jul 2010 03:20:39 +0000 http://wordpress.org/?v=2.9.2 en hourly 1 Fear and Liver Failure http://novelpatient.com/2010/05/03/fear-and-liver-failure/ http://novelpatient.com/2010/05/03/fear-and-liver-failure/#comments Tue, 04 May 2010 00:25:51 +0000 Novel Patient http://novelpatient.com/?p=796 fear not necklaceIt’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.

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Image by Jody Art via Flickr

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]]> http://novelpatient.com/2010/05/03/fear-and-liver-failure/feed/ 3 Patience in the Hospital http://novelpatient.com/2010/04/29/patience-in-the-hospital/ http://novelpatient.com/2010/04/29/patience-in-the-hospital/#comments Thu, 29 Apr 2010 22:19:59 +0000 Novel Patient http://novelpatient.com/?p=790 (note to self)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.

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]]> http://novelpatient.com/2010/04/29/patience-in-the-hospital/feed/ 2 De-Stress http://novelpatient.com/2010/01/07/de-stress/ http://novelpatient.com/2010/01/07/de-stress/#comments Fri, 08 Jan 2010 04:59:16 +0000 Novel Patient http://novelpatient.com/?p=498 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.

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]]> http://novelpatient.com/2010/01/07/de-stress/feed/ 4 High Hopes http://novelpatient.com/2009/11/07/high-hopes/ http://novelpatient.com/2009/11/07/high-hopes/#comments Sat, 07 Nov 2009 19:45:16 +0000 Novel Patient http://novelpatient.com/?p=439 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 HOPEcan 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.

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]]> http://novelpatient.com/2009/11/07/high-hopes/feed/ 0 Dreaming Big http://novelpatient.com/2009/10/14/dreaming-big/ http://novelpatient.com/2009/10/14/dreaming-big/#comments Thu, 15 Oct 2009 06:22:22 +0000 Novel Patient http://novelpatient.com/?p=401 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.

2947840674_a36744017e_oIt can be little things you still can take pleasure in.  For me it is things scrapbooking, writing this blog, reading a good book.  But sometimes you have to dream big and push yourself.  Sometimes you have to WRITE a good book.

There are a lot of things I really can’t do.  So many things I gave up due to my illnesses.  I no longer can go hiking or play tennis.  I can’t even go out in the sun much due to sun sensitivity.  Before I got sick I dreamed of being a filmmaker and was attending University of Southern California’s film school in pursuit of that dream.  Sadly illness and the financial hardship that often comes with made me a college drop out.  I used to love acting and community theater… another passion I’ve had to let fall by the wayside.

But it hasn’t been all giving things up.  My illness has made me push myself to find new ways to stimulate, entertain, and express myself.  I discovered my passion for scrapbooking and other crafts.  With nothing to do but sit at my computer all day long, I learned I had a knack for the technical .  Now I can build websites and social networks from bed.  I got involved in alternate reality games as a player and later as a game designer.  Through these games I found an online community of the most supportive, caring, and talented people I know who I feel fortunate to call my friends.  Friends that have accepted me illness and all.  I started writing this blog and rediscovered my passion for writing.

nano_flyer_thumb2009Which is why next month I am going to push myself once more.  Next month is National Novel Writing Month, and I have signed myself up for the second year in a row.  And along with the other participants, I am going to try and write an entire novel in a month.

It is scary to announce this here on this blog because now I am in a way accountable to someone other than myself.  But I think that will be a good thing as last year I barely managed to write 1000 words.  Last year, I was fresh out of a 6 week hospitalization, but my novel succumbed to the pain and the fatigue and the brain fog.  I am worried that I won’t be able to concentrate this year.  That the pain will be too distracting.  That I’ll be too tired.  But then I remember all the things I have already given up and all the things I have gained since this illness began and decide that if I give up trying and I give up the DREAM then I have already lost.

If I don’t end up writing a novel in a month, so be it.  Frankly I would be happy to make a big dent in a rough draft.  Even that would be a huge accomplishment for anyone.  But I’m dreaming big, so I’m going for the whole thing.

During the month of November, I invite you to track my word count as I write on my NaNoWriMo page.  I invite you to cheer me on, or even join me!  If writing a whole novel in a month isn’t you’re thing, I hope you’ll think about the things you’ve given up along the way due to your own pain (physical or otherwise) and all the things you’ve gained along you’re own journey, and still remember how to dream big.

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]]> http://novelpatient.com/2009/10/14/dreaming-big/feed/ 3 End of the Road? http://novelpatient.com/2009/09/26/end-of-the-road/ http://novelpatient.com/2009/09/26/end-of-the-road/#comments Sat, 26 Sep 2009 22:17:16 +0000 Novel Patient http://novelpatient.com/?p=367

“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?

il vuoto

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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]]> http://novelpatient.com/2009/09/26/end-of-the-road/feed/ 10 Visible http://novelpatient.com/2009/09/14/visible/ http://novelpatient.com/2009/09/14/visible/#comments Mon, 14 Sep 2009 21:33:02 +0000 Novel Patient http://novelpatient.com/?p=345 You Are Free 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 visible.  The pain from my arthritis became so severe I could no longer walk or even stand.  I was forced to use a wheelchair for my mobility.

Before the wheelchair (and the walker that came before it), my illness was completely invisible.  At the time I found it completely frustrating that no one could see that I was sick.  People assumed that what they couldn’t see couldn’t possibly be serious.  Sometimes people assumed that what they couldn’t see wasn’t even real.  Now I wish I could ditch the wheelchair and still pass myself off as “normal” when I wanted to.  I feel like now my first impression always inevitably includes my wheelchair.

But despite this very visible symbol of my illnesses, I feel more invisible than ever.  It is very hard to go out in a wheelchair, and I am usually too tired and in too much pain to do so.  As a result, I am mostly home-bound.  I am literally invisible to the people in my life I used to see in person.  Out of sight.  Out of mind.

But though I am invisible to most people in the physical world, I am very visible in the virtual world.  Through this blog my illness is not invisible at all.  It is there for people to see plain as day.  Through this blog the invisible becomes visible.  Here I can let you see the things that most people can’t.

Here the joint pain, the numbness in my left side of my body, the severe dryness, the low grade fevers, the debilitating fatigue, the pain when I swallow, the nausea, the stomach pain, the rib pain, the muscle weakness, the tremors, the migraines, the involuntary muscle moments, the memory and concentration problems, the seizures, the sleep apnea, and the obsessive compulsive disorder all become visible.

Here too, the emotional toll is no longer invisible.  The worry, the loneliness, the anxiety for my future, the grief for how things once were, and the sadness for the friends I’ve lost along the way all become visible.

And I especially hope that lessons I’ve learned, the inner strength I’ve found, the faith in myself, and hope for the future are not invisible here either.

09_blogging-badge2 National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

Start a blog on Novel Patient Community today and blog about your chronic illness in support of the awareness week!

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]]> http://novelpatient.com/2009/09/14/visible/feed/ 1 Busy Busy Busy http://novelpatient.com/2009/05/19/busy-busy-busy/ http://novelpatient.com/2009/05/19/busy-busy-busy/#comments Wed, 20 May 2009 04:52:37 +0000 Novel Patient http://novelpatient.com/?p=133 In an effort to stay constantly busy and stave off boredom (every Novel Patient’s ultimate enemy), I tend to take on a lot of projects.  And lately I think I may have taken on a few too many.  I tend to have a hard time finding that balance between bored and too busy.  Lately I’ve been tipping the scales towards the too busy side.  And then comes the stress which isn’t good for me.  Stress can make my diseases worse.  And I definitely don’t want that.

But being bored is a much worse evil.  My body may be sick but my brain doesn’t have to atrophy.  Nothing makes me more depressed than feeling like my mind is turning to mush.  That I am wasting my life.

So I’ve found ways to do something with my life despite being sick in bed most of the time.  The computer is a god send.

But my constant question is: how to find that balance and be just busy enough?Recent Comments:

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]]> http://novelpatient.com/2009/05/19/busy-busy-busy/feed/ 3 Woken – a poem http://novelpatient.com/2009/02/22/woken-a-poem/ http://novelpatient.com/2009/02/22/woken-a-poem/#comments Sun, 22 Feb 2009 18:34:57 +0000 Novel Patient http://novelpatient.com/?p=85 As my body wastes away

I am disovling into thought

And it seems that onen day soon

Will my mind too begin to rot

Things definable grow dimmer

As each day fades into night

Yet truth begins to glimmer here

Where right was wrong was right

I am not my body broken

I can shed it with my pride

And from a sleep be woken

To possibility still infinite and wide

———————————————–

I wrote this late last night.  Kinda like it :) Recent Comments:

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]]> http://novelpatient.com/2009/02/22/woken-a-poem/feed/ 1 On being a “Novel Patient” http://novelpatient.com/2008/12/09/on-being-a-novel-patient/ http://novelpatient.com/2008/12/09/on-being-a-novel-patient/#comments Wed, 10 Dec 2008 06:48:10 +0000 Novel Patient http://novelpatient.com/?p=8

When I first came up with the idea for this blog, I had a lot to say.  I had read a lot of writers blogs, and I had read a lot of patient blogs over the course of several prolonged hospitalizations.  And I thought a blog would be the perfect forum for me to practice writing and talk about my experiences as a patient with multiple autoimmune diseases.  I came up with the name “Novel Patient” because I thought it cleverly described me on multiple levels.  I’m writing my first novel.  I’m a patient.  I have several unusual diseases.  Etc.

But before I could get started, the brain fog really set in and I found that writing a sentence took infinitely more time and concentration and effort than I had.  I effectively lost my writing voice.  And as I struggle now finally several months later to write this first entry (which in the past would have taken no effort or time at all), the name “Novel Patient” takes on yet another meaning as I try and be patient with myself and my seemingly endless new limitations and refind my writing voice.

And now several minutes have elapsed while I starred at the dusty screen of my Macbook trying to remember where I was going with this.  But, alas, it’s gone and not coming back.

But it doesn’t really matter because I can adapt.  It’s probably the most important thing I’ve learned about being a novel patient.  Adaptation.  So I hope you’ll forgive my fragmented writing because I’m afriad its part of the package.  Along with the brain fog and everything else.

poem

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