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!

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!

Things have been emotionally rough and raw lately.  Lot’s of things are in transition.  Relationships in flux.  And I’m still stuck in the hospital (33 consecutive days and 39 total days in the hospital by my count).  I’m trying to think of it as being 39 days closer to being released from the hospital.  It doesn’t work that well though.  But cheery flowers like these ones I got from my Great Aunt and Cousins brightened my room and my mood.

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

EDIT: Last night my friends Spencer, Kristi, and I had a blast in my hospital room writing music to my lyrics.  Here’s a REALLY rough take of it – complete with my voice still completely hoarse from an allergic reaction and nasal from having a feeding tube up my nose.  Hehe.  So forgive my lack of ability to hit any of the notes right now, but I at least wanted to give you the idea.

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.

As the month draws to a close, I am reminded that April is Sjogren’s Syndrome Awareness Month.  Sjogren’s is my primary diagnosis, the overarching disease process that ties all (or most) or my symptoms together.

But what is Sjogren’s Syndrome?  According to Sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

To make it more personal…

• Imagine you can’t eat crackers because you don’t have enough saliva to swallow them.
• Imagine you are so dry that it hurts to use tampons.
• Imagine your eyes are too dry and painful to wear contacts.
• Imagine you need to take 29 medications to keep your illness under control.
• Imagine the disease effects your central nervous system and causes difficulty concentrating and remembering things.  Imagine it sometimes even causes vertigo, seizures, numbness, facial drooping, and episodes of paralysis.
• Imagine the disease has spread to your pancreas in the form of autoimmune pancreatitis causing severe pain and making it difficult to digest food without the help of medications and sometimes a feeding tube.
• Imagine the disease causes such severe joint pain you are confined to a wheelchair for over a year and now use a walker to stand and walk.
• Imagine you are hospitalized several times a year for up to six weeks at a time.
• Imagine you have Sjogren’s Syndrome.

There are so many facets to it this doesn’t even begin to cover how Sjogren’s Syndrome affects me, but I hope this provides a glimpse into my world.

For more information see my post from last year on Sjogren’s Syndrome Awareness Month or visit Sjogrens.org.