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.

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.

“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.

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.

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!