Sometimes I forget that learning to live with a chronic illness is an endless grieving process.  I tend to get very caught up in maintaining a positive attitude, and fail to let myself feel the negative feelings that naturally come with all the change and loss I’ve experienced while dealing with a chronic illness.

This past year has been a difficult one for me.  There have been lots of changes and losses.  I endured two long hospitalizations – one for six weeks and one for eight weeks with one week intubated in the ICU.  I’ve been through multiple changes in caregivers.  I’ve been dealing with my parent’s separation and impending divorce.  I even made a major positive life change when I converted from being Jewish to the Church of Jesus Christ of Latter Day Saints,  and though this has brought me so much happiness, it has wrought some negative side effects – significantly straining some relationships with family and friends.

Through all this I think I’ve maintained a remarkably positive attitude.  I’ve become an expert at coping.  I’ve channeled my energy into other things I still can do like scrapbooking, Alternate Reality Game design, web and graphic design, and novel writing.  This has helped me keep my spirits up as I’ve created an identity for myself beyond being a “sick girl”.

This is all well and good.  In fact it’s great!  I love being happy.  I have no desire to wallow in self pity.  But that doesn’t mean that the negative feelings go away.  But where do they go?

I’ve come to realize recently that I’ve been stuffing them away.  I still feel deep sadness, mourning, and loss.  I still have intense fear for my immediate safety and my future.  But I keep that all hidden deep beneath my ever positive outlook.  Why?  Because feeling them hurts and I’m afraid of what they’ll do to me and my relationships if I let myself feel them.

Still they come out in other ways.  I eat too much and don’t sleep enough.  My obsessive compulsive disorder flares up.

So I recently came to the conclusion that I needed a safe place to let myself feel all these negative emotions once and a while.  I decided it was time to see a psychologist – one that specializes in disability and chronic health problems.

I’ve only had one session so far, but that one session made me realize just how much I’ve bottled it all up and just how much I need to let it all out.  Because living with a chronic illness is an endless grieving process, and sometimes it’s important to let myself feel the full impact of that.

You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!

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.

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.

1. The illness I live with is:  Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: I was a small child.
4. The biggest adjustment I’ve had to make is: to life in a wheelchair.
5. Most people assume: that I’m too young to have this many health problems.
6. The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
7. My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore.  I have a hard time concentrating on TV.
8. A gadget I couldn’t live without is: my mac.  It is my connection to the rest of the world.
9. The hardest part about nights are: trying to get sleepy despite the pain.
10. Each day I take 28 different medications. (No comments, please)
11. Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
12. If I had to choose between an invisible illness or visible I would choose:  an invisible one.  Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
13. Regarding working and career: I am currently on disability.
14. People would be surprised to know: that I don’t remember what “no pain” feels like.
15. The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
16. Something I never thought I could do with my illness that I did was:  travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
17. The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
18. Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
19. It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
20. A new hobby I have taken up since my diagnosis is: scrapbooking.  I’m completely obsessed and even do it from bed when I can’t sit up at the table.
21. If I could have one day of feeling normal again I would: backpacking through Australia.
22. My illness has taught me: that happiness is where you make it for yourself.
23. Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
24. But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
25. My favorite motto, scripture, quote that gets me through tough times is:  Everything might not happen for a reason, but you can make a reason out of everything that happens.
26. When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
27. Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
29. I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
30. The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com