When you’re sick it can be really difficult to listen to other people’s complaints – especially if they seem trivial.  Excessive complaining about physical problems especially can be really wearing for me to listen to.  I often find myself comparing my pain and deeming the other person’s insignificant.  I don’t mind hearing about their paper cut once.  But I have my limits.  After the 3rd of 4th time I’m ready to snap, “I could tell you a thing or two about being in pain!”

On the flip side some people are afraid to ever complain to me.  I have to remind them that I don’t have a monopoly on being in pain.  If they aren’t feeling good they can tell me.  I know what it’s like and I can empathize better than most as a result.

Finally there’s people who turn complaining about physical problems into a competition.  I REALLY loathe this.  Being sick or in pain isn’t about one-upping each other.

So my advice to healthy people out there who are trying to figure out if it’s okay to complain to their chronically ill friends or not is this:  Find a balance.  If you are genuinely not feeling well, don’t be afraid to speak up.  Your chronically ill friend will probably know just how you feel.  But know when to stop and  never try to compare your pain to theirs.  Pain is relative anyway.

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’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!

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.