Novel Patient Community

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 [...]

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 [...]

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 [...]

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 [...]

I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in him 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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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. [...]

It’s hard to feel ladylike when you are in the hospital.  Yes, I’m back in the hospital again.  The kidney infection returned Thursday with a vengeance, and, well, here I am.  And not feeling very ladylike at all. I’m sweaty and running a fever.  I haven’t washed my hair or shaved my legs in days.  But there [...]

It’s hard to feel ladylike when you are in the hospital.  Yes, I’m back in the hospital again.  The kidney infection returned Thursday with a vengeance, and, well, here I am.  And not feeling very ladylike at all. I’m sweaty and running a fever.  I haven’t washed my hair or shaved my legs in days.  But there [...]