There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects.  But one of them has nothing to do with being sick.  If you recall last November, I started writing a novel.  It’s working title is The Alone Elevator.  It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself.  Here’s a brief summary:

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

If you enjoyed this post please take a moment to share the love:

Share

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...

Since I’ve been open with my chronic illness, the positives of letting the world take this journey with me have always outweighed the negatives.  But as I strive to make a career for myself, I am starting to wonder if I’ve made the right decision in being so public with my illness.

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

If you enjoyed this post please take a moment to share the love:

Share

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...

Since I’ve been open with my chronic illness, the positives of letting the world take this journey with me have always outweighed the negatives.  But as I strive to make a career for myself, I am starting to wonder if I’ve made the right decision in being so public with my illness.

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:

• Dana Marton commented on Progress! Congratulations, you are one of my picks for the Versatile Blogger Award! Go to my blog post to see
• Diana Lee commented on Progress! I'm grateful to hear you're doing so well. You truly look wonderful.
• cattie commented on Progress! Aww, so happy for you, Lauren, and thanking God you're well. I hope you have tons of fun, an
• Ariana commented on Progress! Yay! So sad I won't be going to ARGfest I love the picture with you standing! Your skirt is
• David F. commented on Progress! Beautiful to see your amazing progress! Congratulations! Have fun a ARGFest… Wish I could be there

---

© Novel Patient for Novel Patient, 2010. | Permalink | No comment | Add to del.icio.us
Post tags: Alternate reality game, alternate reality games, ARGFest, Atlanta, Better, blessing, blog, catharsis, Chronic, Chronic (medicine), Chronic Illness, Conditions and Diseases, Conference, difficult times, Disability, experience, family, flickr, friends and family, game, health, help, illness, journey, life, many blessings, quandary, right decision, sharing, speakers, ssi, story, Support Groups, transmedia

I've been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time!  I feel terrible, and I hope I haven't worried anyone!  But I've been very busy recovering and living my life.  A novel thi Share

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

I’ve been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time!  I feel terrible, and I hope I haven’t worried anyone!  But I’ve been very busy recovering and living my life.  A novel thing!

I’ve made tremendous progress the last 45 days!  I’ve gone from having a feeding tube to clear liquids to solids to totally normal food.  I started out practically confined to bed, but now I’ve been going out and walking around with my walker again.  I even got my PICC line out last week!  Things are looking up!

And since I’ve been feeling so much better, I’ve been able to enjoy a social life again for the first time in a long time.  It can be really hard to make friends when you debilitated with a chronic illness.  I’ve had very little to no social life for years.  Partly due to pain and lack of energy but also due to lack of friends.  But when I was Baptized back in March into The Church of Jesus Christ of Latter Day Saints, little did I know that I would suddenly find myself with as much social life as I had the energy to keep up with.  It’s been a great blessing!

In fact, I’m feeling so much better that I’m actually leaving to go out of town on Wednesday to ARGFest – a conference for the kind of online games I develop and play.  I will be going for 5 days, and I will be taking my caregiver with me to help me out.  I am super excited and thankful that I am well enough to go!

Now that’s what I call progress!

Recent Comments:

• NovelPatient commented on The Unexpected I'll check it out thanks! Hope all is well with you!
• sandie commented on The Unexpected http://www.thecodeoflife.info/pages/The%20Code%20…. I don't know yet if this has any merit. I
• NovelPatient commented on A Place For Him Thanks!
• Alison commented on A Place For Him Not bad for ten minutes! The Dog looks so cute.
• Genko commented on Shattered Trust Hi Lauren: Sorry this has been an additional stress for you. I think it must be almost impossible fo

---

© Novel Patient for Novel Patient, 2010. | Permalink | No comment | 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

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.

Recent Comments:

• Bruce commented on Seeing Double [...] Novel Patient shares thoughts on facing life’s difficulties and how to keep a positive attitud
• Maz commented on Hospital Update Just wanted you to know that I am really hoping this procedure lets the pancreas rest & recover.
• Mela commented on Seeing Double big hugs from me, Lauren! I can’t imagine how much courage it takes for you every day to maintain su
• 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

---

© Novel Patient for Novel Patient, 2010. | Permalink | No comment | Add to del.icio.us
Post tags: ADD, alternative medicine, art, blog, boundaries, brain, brain stem, case reports, chase, Conditions and Diseases, dad, different path, differential, doctor, ER, Fear, feeling, feelings, gong, great unknown, health, health an, hospital, impasse, inner psyche, Internal medicine, internist, isolated case, life, little girl, Medicine, medicine doctor, multiple sclerosis, Neurological Disorders, novel, patient, Physician, scientific method, stress, struggle, title, treatment

I'm Daddy's little girl all grown up, but I still need my daddy.  I want to bask in his 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 Share

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:

• Mela commented on Seeing Double big hugs from me, Lauren! I can’t imagine how much courage it takes for you every day to maintain su
• 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
• Gillian commented on Hospital Update Thinking of you. You’re in my prayers and I hope that the procedure went really well this time.
• Wacky Lisa commented on Hospital Update I really hope tomorrow goes well & that the NJ tube helps a great deal.

---

© Novel Patient for Novel Patient, 2010. | Permalink | 2 comments | Add to del.icio.us
Post tags: autoimmune, autoimmune neurological disease, Better, choices, Chronic, cognitive abilities, Conditions and Diseases, dark and light, Demyelinating Diseases, disease, double vision, eye patch, Faith, health, health problem, hope, hospital, infection, left leg, legs, life, multiple sclerosis, Neurological Disorders, neurological problems, neurologist, Neurology, patient, permanent damage, pirate, positive attitude, situation life, symptom, time incident, two choices, two ways, Visual perception

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

If you enjoyed this post please take a moment to share the love:

Share

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...

I'm scared about tomorrow.  Tomorrow I have to get a feeding tube put in.  But let me back up. My liver function has been declining.  But now my GI doctor thinks that my liver problems might be from the oral antibiotic they had me on for my ki Share

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...