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 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.

Which 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.

Part of dealing being chronically ill is learning to smile through the hard times.  But right now though I’m having a hard time doing even that.

On Monday night, when I went to take my DailyMugShot, I wasn’t satisfied with my first, second, or even third attempts at my picture.  My smile was crooked in all of them.  Finally I realized that no amount of retakes would correct the problem.  I couldn’t make my face smile evenly on the left side.  In fact, the whole left side of my face was drooping slightly and my pupils were unevenly dilated.

I tried not to panic.  I looked back at my older daily pictures and noticed that this had been going on all week and getting worse with each picture.

A visit to my neurologist confirmed my suspicions that as I’d been trying to taper my dose of Prednisone my brain inflammation was returning.  So now I’m back up on an even higher dose of Prednisone to try and get it back under control.

In the meantime, I’m trying to continue to smile through the hard times.  Even if my smile is a crooked one.

Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

I have a huge passion for scrapbooking!  I do it almost everyday.  I even do it from bed to conserve energy which is in short supply lately.  My caregiver Melissa is also obsessed withscrapbooking , so she helps me with the things I have trouble with.  Cutting straight when my tremor is bad or my the arthritis in my hands is acting up.  Not only doesscrapbooking give me something to do, it’s extremely therapeutic to exercise my creativity.  I’m also making something I will treasure forever.  It can be bittersweet looking back on times when I was healthier and just plain sadscrapbooking pictures from long hospitalizations, but its a part of my life and it’s good to remember.  The good and the bad and the in between.

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I spend a lot of time in my room being ill, so I also enjoy making items to decorate it with.  Over the last few days Melissa and I decoupaged my lapdesk I use to put my keyboard and mouse on while I work at my computer from bed.

Finally I enjoy painting.  I usually use watercolor-colored pencils because they are neat enough to do even from bed.  I like to paint things that symbolize my internal process.  It helps me process the experience of living with a chronic illness.  My often abstract and surrealistic art makes it more tangible.  I think this one I did earlier this week speaks for itself.

I just need to vent.  Feeling a bit sorry for myself.  I’m just so frustrated and tired of how things are going!  I’ve been in the hospital a total of 2 weeks with this kidney infection now.  I’m only 25 years old but my health is just completely in the toilet.  I’m so ill I need a full time caregiver and am in a wheelchair.  I can hardly get out of bed most days.  I feel like the example for every possible complication of Sjogren’s!  Between the AI pancreatitis and the AI hepatitis and the brain inflammation wreaking all sorts of havoc.  Then there’s the arthritis which has me in a wheelchair that I wonder if I’ll ever get out of.

I’d say I’m too young for this, but obviously I’m not.

I’ve lost most all my friends to being sick.  None of them wanted to deal with it.  They are busy leading their lives and don’t have time or the desire to see or talk to me.

I’m tired of being such a financial and time burden on my mom.  I feel so physically helpless and I miss my independence terribly.

Most of the time I put on a cheerful face and make the best and even find the positives of this bad situation, but right now I just am feeling really angry and frustrated and needed to let it out.  So thanks for listening.