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!

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!

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 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 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.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day 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.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

It’s a terrible thing to live in fear.  I make a point of not letting my fear overcome me.

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