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!

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

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 kidney infection, so I of course stopped that.  (My kidney infection seems to finally be better at least.)  With the liver my doctors want to wait 2 weeks to see if the levels normalize with me off the antibiotic.  If not then I’ll need a liver biopsy to determine what is causing it be it Autoimmune Hepatitis or something else, and we’ll go from there.

Over the last couple days, I’ve tried to eat clear liquids again and all I get is more pain and nausea.  I tried for the last time today, and I still had the same horrible nasuea and pain.  So tomorrow I’m going to have a feeding tube put in.  We are going to keep me on tube feeding for a WHOLE MONTH!!!  Why?  To really give the pancreas a chance to rest and calm down.  That means no eating for a month!!!  Ugh.

In the past, we would have just upped my dose of Prednisone to calm down the Autoimmune Pancreatitis, but now the side effects of the Prednisone are causing me too much harm and my doctors are afraid of raising it even more.

So tomorrow I will get a Nasojejunal Tube (or NJ Tube) placed.  It will go up my nose, down by throat, through my stomach, and into my small intestines.  It will allow me to get nutrition without aggravating my Autoimmune Pancreatitis.

So why am I so afraid?  Well for one thing you have to be under anesthesia for it.  Secondly, last time I had a feeding tube placed I woke up afterward into a nightmare.  I had somehow been exposed to latex which I have a life threatening allergy to.

I woke up feeling like I was drowning.  I couldn’t breathe and I thought I was going to die.  I kept coming in and out of consciousness, but each time I awoke there were more doctors and nurses around me.  They couldn’t stabilize me in the Recovery room and had to move me to the ICU and put me on a machine to help me breathe.  I spent the day and night in the ICU recovering from the incident.

Since I found out that I was getting another feeding tube I have been having flash backs to the incident.  I am very nervous something similar will happen again.  Luckily the hospital is a lot more latex free than it was when this happened a few years ago.  But even so, I am having a hard time staying calm about it.

But if all goes well with the feeding tube, and I am able to tolerate the tube feedings well, they might be able to send me home from the hospital on Saturday.  If not, then I don’t know when I’m going to make it out of this place.

It’s already been 14 consecutive days and 20 total days that I’ve spent here in the hospital, but I’ve got to keep the faith!  I know I will make it out of here eventually.  In the meantime, my friends and family have been wonderfully supportive.  I owe them so much.  And when things are at their worst, I’ve been calling upon God to help me through.  He has been such a constant source of strength, comfort, and support.  I lived so long without God in my life, but now I don’t know how I’d get by without Him.

In the end, I just have to deal with things as they come.  Things are what they are, and I know that with my own inner strength and God’s help I can get through anything.  I could cry about it (and sometimes I do), but I’d rather laugh and make the best of things.  Because life is too short.

My growing collection of flowers from friends and family.

Though I am a Novel Patient, patience isn’t my strong suit.  But patience is what is required of me right now.

My kidney infection has triggered a flare of my Autoimmune Pancreatitis.  I’ve completely lost my appetite and am having severe upper abdominal pain that bores through to my back.  Luckily I am at the hospital with all my specialists including my Pancreatic specialist.  In terms of treatment, my doctors are really afraid to give me more Prednisone (a steroid) while I am still fighting this infection.  Plus they don’t want to undo my progress in tapering the Prednisone.  So the treatment is to keep me completely off anything by mouth – no food or even water – for several days until this hopefully calms itself down again.

So they are keeping me here through the weekend, and I get to practice being patient.

I am plain tired of it all though.  I am tired of being in the hospital so often that it becomes so commonplace to my family that they hardly bat an eye.  I am tired of having IVs and PICC lines hanging out of my arm and being covered with bruises from botched attempts at them.  I am tired of being woken up in the middle of the night to get my vitals checked.  I’m tired of all the medications and the side effects.  (A new fun one from the IV antibiotic is blurred vision.)  I’m tired of being bored and lonely and alone in the hospital.  I am tired of being so tired.

I wrote a poem just now:

In The Hospital

In the hospital
Knowing only pain
And loneliness
Poked and prodded
Woken in the night
Woken in to a nightmare
But this is no nightmare
This is my life
So I search
For a beacon of hope
For a way to get through
And make this trial a tool
To grow and evolve
Past the loneliness
And past the pain
Poking and prodding
My soul into change
Though I dream
And I hope
For health
I cannot wait
So one day at a time
In the hospital

On the upside, I get to take a shower tomorrow.  A REAL shower!!!  I can’t explain how much I’m looking forward to that!

Also my church has been amazing!  They’ve been calling and texting and most importantly visiting me.  It’s been awesome to have such a source of support for the first time in my life!  Their visits have broken up the monotony and made it so much easier to be patient.

And patient I must be – a novelly patient patient.

I’m well on my way on the road to recovery.  I’ve been doing more and more things independently, and I’ve been walking up a storm.  But I’ve been asking myself how much better is better enough?  What risks am I willing to take to achieve a complete recovery?

Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church.  Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo.  The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods.  It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year.  I also feel more visibly disabled than when I’m just using my walker.

And I’m worried I’m headed back to my wheelchair.  The more I walk the more my joints have been hurting me.  But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee.  Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury.  I’m also supposed to start physical therapy.

So though I’ve been doing great at increasing the distance I can walk, it has come at a cost.  So that is one part of the equation.

The other part of the equation is the question of how I’ve been able to reach this point.  I believe it is largely a miracle.  A gift from God that has allowed me to recover my strength so quickly.  But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit.  So the question becomes would another round of Rituxan would get me even farther?  And is that worth the risk?

Those Rituxan infusions were no walk in the park.  I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash.  And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections.  But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions?  That is a question I will discuss with my Rheumatologist at my next appointment.

In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that?  Am I better enough?  But even as I write this, I think I know the answer.

No.

I want my life back.  I want to live without pain every moment of every day.  I want to be able to go hiking and play tennis again.  I want to be able to make plans and not worry about how much energy I’ll have.  I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them.  I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.

So NO I don’t want to be better enough.  I want to be better!  And I’m willing to risk a lot to get there.