Related posts:

1. Being Public with Chronic Illness Since I've been open with my chronic illness, the positives of letting the world take...
2. Hospital Update I'm scared about tomorrow.  Tomorrow I have to get a feeding tube put in.  But...
3. Sjogren’s Syndrome Awareness Month As the month draws to a close, I am reminded that April is Sjogren's Syndrome...

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

Related posts:

1. Definitions: More Than Just a Novel Patient There are many things that define me a Novel Patient, mainly my collection of unusual...
2. Better Enough? I'm well on my way on the road to recovery. I've been doing more and...
3. Keeping The Faith Through my chronic illness, I have come to realize how crucial it is to have...

© Novel Patient for Novel Patient, 2010. | Permalink | 3 comments | Add to del.icio.us
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

Related posts:

1. Keeping The Faith Through my chronic illness, I have come to realize how crucial it is to have...
2. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
3. A Place For Him Things have been emotionally rough and raw lately.  Lot's of things are in transition.  Relationships...

Being so open with my illness has certainly brought me many blessings.  I’ve had so much vital support especially during difficult times from the people that read this blog.  Sometimes just reading caring comments from people left here have made the world of difference in my ability to get through the day.  My friends and family also have been better able to know what’s going on with me and stay in the loop, so that they can better understand and support me.  I’ve been able to help others by sharing my story and helping people who are going through similar situations not feel so alone.  And I’ve had an outlet for catharsis for myself.

There have also been some downsides.  Sometimes I get unkind and unwelcome comments left here.  Being so open about my illness opens me up to everyone’s opinion on the matter.  I also sometimes have to be careful of what I say because I know that a person I care about in my life will read what I write and I don’t want to hurt them.

But lately I’ve been working really hard to get myself off disability by starting a career in Transmedia.  I went to ARGFest, a conference for Transmedia and Alternate Reality Games, a few weeks ago where I networked and learned a great deal from the panels and speakers.  I had a blast and came back energized to continue pursuing this as a career.  But while I was there I discovered that a lot of people follow my blog, and I started to wonder how that might negatively effect my chances of succeeding in that industry.  Would people not hire me because they had read my blog and knew I was ill?

So that leaves me in sort of a quandary.  This blog is a big part of my life, but I don’t want to give it up, but I also don’t want to sabotage my own career.  So what do you think?  How has being open with your illness been a positive or negative experience for you?  How has it affected your career?  Please leave me a note in the comments!

Here are some photos from my trip to Atlanta, Georgia for ARGFest!

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

Related posts:

1. Full Disclosure Before I was in a wheelchair and now a walker, my illness was pretty invisible....
2. Keeping The Faith Through my chronic illness, I have come to realize how crucial it is to have...
3. Progress! I've been home from the hospital for 45 days today I just realized, and I...

Related posts:

1. Walk By Faith Sunday was a small miracle in the grand scheme of things but not so small...
2. Keeping The Faith Through my chronic illness, I have come to realize how crucial it is to have...
3. Better Enough? I'm well on my way on the road to recovery. I've been doing more and...

© Novel Patient for Novel Patient, 2010. | Permalink | 7 comments | Add to del.icio.us
Post tags: ARGFest, Baptized, blessing, blog, Busy, caregiver, Christianity, Chronic, Chronic Illness, Church, church of jesus christ, church of jesus christ of latter day saints, clear liquids, Conference, energy, feeding tube, games, hope, hospital, illness, jesus christ of latter day saints, Latter Day Saints, LDS, life, living my life, pain, patient, picc line, Religion and Spirituality, walk, walker, WALKING

Related posts:

1. Shattered Trust I'm Daddy's little girl all grown up, but I still need my daddy.  I want...
2. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
3. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...

Related posts:

1. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
2. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
3. Seeing Double There are two ways to look at everything. Like dark and light. Like black and...

There are two ways to look at everything.  Like dark and light.  Like black and white.  Positive or negative.  There are two ways to view every situation life throws your way.

People often ask me how I maintain such a positive attitude despite all I go through.  I tell them that first of all life is too short to spend being unhappy.  Besides… I have two choices.  I can be sick and miserable or I can be sick and happy.  The choice is mine.  And I chose to be sick and happy!

It’s a sort of double vision as I see it.  There are two ways to look at every situation.  And right now I literally am experiencing double vision.  I am also having extreme difficulty lifting and moving my left leg.

Yesterday I saw a neurologist here in the hospital.  (Yes I am STILL in the hospital – 21st consecutive day and 27th total day.)  And he thinks that one of two things is going on.  Either I have an ongoing chronic probably Autoimmune neurological disease causing this and my other neurological problems.  If this is the case it might be something like Multiple Sclerosis or something similar.  Otherwise I might have had a one time incident a few years ago when I couldn’t move either of my legs for a month that left me with permanent damage.  Either way the infections I’ve been fighting has been exacerbating my symptoms.

While we are trying to figure things out my neurologist gave me an eye patch so that my double vision is reduced by looking out of only one eye.  Now I can see more clearly.  And what I see is this…

I could curl up into a ball and cry about having another serious health problem – a health problem that is effecting not only my vision but my mobility and my cognitive abilities.  Or I can realize that I already have had this problem either way.  Now I’ll finally hopefully have a name to put to it and a way to treat it and make it better and easier to live with!

Looking like a pirate with my eye patch (ARRRRRR), I no longer have double vision.  My vision is clear (despite the fact that it is still a bit blurry even with my glasses).  So I can clearly see that I have a choice in how I view my situation.  And I chose to deal with it with strong faith that things with be okay somehow as long as I choose happiness every time!

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

Related posts:

1. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
2. Dependency Having a chronic illness can rob you of your independence. Suddenly you find yourself dependent...
3. Hospital Update I'm scared about tomorrow.  Tomorrow I have to get a feeding tube put in.  But...

Related posts:

1. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
2. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
3. Reporting from the Hospital I hoped for the best, but prepared for the worst, and unfortunately the worst won...

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

Related posts:

1. Fear Fear and OCD are a bad combination. It's bad enough to have a fearful thought...
2. Patience in the Hospital Though I am a Novel Patient, patience isn't my strong suit.  But patience is what...
3. My Illness By The Numbers 17 The number of diagnoses I've accumulated so far... Sjogren's Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis,...