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!

Recent Comments:

• amanda commented on Scrapbooking My Illness Journey great idea! see my blog for my take on scrapbooking your illness, too! {hugs}
• Laura H. commented on Definitions: More Than Just a Novel Patient I've been thinking about what you've written here for a few days now, but I'm still s
• Selena commented on Scrapbooking My Illness Journey The story about your sister really touched my heart. I also love your scrapbook pages! Thanks or sha
• Nikki commented on Complaining About Complaining Sometimes a friend of mine will start to tell me of his or her physical afflictions or how they are
• Nikki commented on Complaining About Complaining Thanks for writing and posting this. When we are in heaven, Lauren, you and I 'will run and not

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Post tags: actual time, Appointment, appointments, art, arts and crafts, bat mitzvah, College, college graduation, crafts, creative muscles, Danielle, doctor, Doctors, ER, experience, experiences, future, glue, happy memories, help, high school graduation, hospital, How-To Sites, illness, Infusion, journey, last several years, Lauren, life, life got in the way, mom, novel, obsession, passion, patient, philosophy, picture, rituxan, rituxan infusion, scrapbook, scrapbook memories, scrapbook page, scrapbooker, scrapbooking, sister, walk, WALKING

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!

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• Victor Echo commented on Seeking an Accessible Vehicle Good luck finding the ride for your new ride NP and don't feel guilty. Get out and enjoy the wo
• amanda smith commented on Woken – a poem Awesome!
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• NovelPatient commented on Being Public with Chronic Illness Wow! That is great that you have been able to write for a living! What kind of writing do you do? Th
• NovelPatient commented on 30 Things About My Invisible Illness You May Not Know Aww thank you so much! I'm doing really really well! Really happy! How have you been? ((HUGS

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Post tags: actual time, Appointment, appointments, art, arts and crafts, bat mitzvah, College, college graduation, crafts, creative muscles, Danielle, doctor, Doctors, ER, experience, experiences, future, glue, happy memories, help, high school graduation, hospital, How-To Sites, illness, Infusion, journey, last several years, Lauren, life, life got in the way, mom, novel, obsession, passion, patient, philosophy, picture, rituxan, rituxan infusion, scrapbook, scrapbook memories, scrapbook page, scrapbooker, scrapbooking, sister, walk, WALKING

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down.  From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

As I’ve been writing this novel I’ve been thinking lately about how I define myself.  So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am.  But that is not how I want to be defined.  I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs.  There are so many other things that define me.  And it occurs to me how important it is that I remember that.  I am a creative thinking feeling being.  I am a graphic and web designer, a scrapbooker, a novelist.  I am a daughter, a sister, a friend, a child of God.  I am so much more than just a “Novel Patient”.

But how do others see me?  Do they see just a “sick girl” with a walker?  Or do they see the real me?  I think that the more I define myself as I want to be defined the more people will see the me I want them to see.  If I focus on being a patient that is what will define me.  But if I focus on being a Novel PERSON…  well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

Recent Comments:

• amanda commented on Scrapbooking My Illness Journey great idea! see my blog for my take on scrapbooking your illness, too! {hugs}
• Laura H. commented on Definitions: More Than Just a Novel Patient I've been thinking about what you've written here for a few days now, but I'm still s
• Selena commented on Scrapbooking My Illness Journey The story about your sister really touched my heart. I also love your scrapbook pages! Thanks or sha
• Nikki commented on Complaining About Complaining Sometimes a friend of mine will start to tell me of his or her physical afflictions or how they are
• Nikki commented on Complaining About Complaining Thanks for writing and posting this. When we are in heaven, Lauren, you and I 'will run and not

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Tests a trickling in and no definitive diagnosis concerning the cause of my brain stem inflammation is yet emerging.

So I was especially pleasantly surprised to receive this cuddly visitor today.  It was just what the doctor ordered.

In the midst of confusion, I often turn to poetry to help capture my thoughts.  I wrote this one in about ten minutes, and I rather like it.  An emotional moment forever frozen like a bug trapped in amber.

A Place For Him

by Lauren Soffer

Life can be wild
Wonder is lost on this child
So she goes it alone
As she makes her way home

But the time she tripped
And she didn’t fall
A silent scream
Yet He heard the call
Still She goes it alone
As she makes her way home

Not ready
Not ready to let go
Not ready
For a hand to hold
Cause even crying all alone
At least she knows
It’s all she knows

Life can be wild
Wonder is lost on this child
This girl must
Grow up
Not a child anymore
Stand up
Reach out a hand
Lift up
Her heart till it holds
Always
A place for Him

Recent Comments:

• Genko commented on Shattered Trust Hi Lauren: Sorry this has been an additional stress for you. I think it must be almost impossible fo
• NovelPatient commented on Shattered Trust I think you misunderstood what I meant. I'm not opposed to alternative treatment all together (
• Suzanne commented on Shattered Trust Lauren, I hope you will give your dad a chance. I’m sure he feels helpless watching you go through s
• Alison commented on Shattered Trust Hey Lauren. I’ve still been thinking about you because it reminds me so much of all I’ve been throug
• Gillian commented on Shattered Trust Hi Lauren. As a mother & a daughter I can kind of see both sides. Watching your child suffer ill

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I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in him strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.  For example, he went against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

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• Th. commented on Seeing Double . Good luck!
• Annie commented on Hospital Update I hope the feeding tube goes well – you are in my thoughts times 110! Annie

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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.

Image by Jody Art via Flickr

Recent Comments:

• amanda commented on Scrapbooking My Illness Journey great idea! see my blog for my take on scrapbooking your illness, too! {hugs}
• Laura H. commented on Definitions: More Than Just a Novel Patient I've been thinking about what you've written here for a few days now, but I'm still s
• Selena commented on Scrapbooking My Illness Journey The story about your sister really touched my heart. I also love your scrapbook pages! Thanks or sha
• Nikki commented on Complaining About Complaining Sometimes a friend of mine will start to tell me of his or her physical afflictions or how they are
• Nikki commented on Complaining About Complaining Thanks for writing and posting this. When we are in heaven, Lauren, you and I 'will run and not

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