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.

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’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.

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!

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.