When I look back on the most rewarding experiences of my life, they are almost all to do with serving others.  Right now I’m working on a community service project called Scrapaganza.  Scrapaganza is a scrapbooking event at the Ronald McDonald House in Los Angeles that celebrates the beauty of every life as a source of inspiration.

Ronald McDonald House provides housing for families who have seriously ill and injured children in the hospital.  These parents and siblings are dealing with very difficult circumstances.  Scrapaganza will be a source of joy during this stressful time in their lives.

The event will be open to all families currently staying at Ronald McDonald House.  After an inspiring keynote, each family will create a beautiful scrapbook telling their personal story and celebrating joyous memories.  Expert scrapbookers will be on hand to lend support and assistance.

Scrapaganza is currently seeking volunteers and donations.  Find out how you can get involved!

Please help me spread the word by posting http://scrapaganza.org to your Facebook, Twitter, and etc!  Thanks so much for your support!

This isn’t one of those happy inspiring posts I often do.  Why?  Well, right now I’m not feeling happy or inspiring.  I’m feeling depressed and frustrated with the world.  Today marks the 8th week of my stay in the hospital.  From here on out I’m setting a new record.  I am just so done with everything.  I just want this to be over.  I just want to go home.  And I’m angry and depressed about it.  I’m tired of trying to have a positive outlook.  Right now I just want to kick something.

People like to tell me that I’m an inspiration to them.  And though I really appreciate the sentiment, I’m really tired of hearing it.  I don’t feel like an inspiration.  I feel like a young woman who’s dealing with way too many health problems as best she can.  I feel like when people say that they are placing me on a pedestal that I don’t deserve.  I didn’t do anything so remarkable except what it took to survive this the best way I knew how.

It’s a lot of pressure to be an inspiration.  Being an inspiration means you are strong in the face of uncertainty.  It means you are brave and positive and happy and fearless.  Once I’m an inspiration, I’m expected to continue to be so.  It doesn’t leave room to be angry or sad or frustrated.  It doesn’t leave room to just want to give up or have a melt down about it.  It doesn’t leave room to have a pity party.  It doesn’t leave room to have a good cry about it.  It doesn’t leave room to be a scared little girl.  It doesn’t leave room to be REAL!

I am tired of being trapped on this pedestal.  On the other hand I’m happy that my story helps people.  I really am.  But not at my expense.  It’s a balancing act.  I didn’t ask for it and I don’t want it.  I just hope I can get off of it before I fall off.

Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word “faith” they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word “faith” is merely defined as “confidence or trust in a person or thing.”

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

I am pleased to announce the opening of the Novel Patient Community beta!  Featuring member profiles, friends, blogs, groups, forums, and more, the Novel Patient Community is a place where patients with chronic illnesses can come together to find friendship, inspiration, and hope!

As a Novel Patient living with multiple chronic illnesses, I’ve found it hard to find people in the real world who can identify with and relate to my experiences, but I realized that through the power of the internet I could create a virtual space where other Novel Patients could gather to share and support each other through our unique journeys.  And so several months ago the concept of the Novel Patient Community was born!

But it wasn’t until this long weekend that I got to work.  Over the last three days I’ve been working tirelessly to build and design the Novel Patient Community from the ground up! (I’d like to thank David Flor, RungeKutta, and RedCT for their assistance when I got stuck!)

Now that my dream has become a reality, I hope you’ll join the Novel Patient Community as we celebrate what makes us all Novel Patients!