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.

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.

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.

I hoped for the best, but prepared for the worst, and unfortunately the worst won out this time.

I’m back in the hospital again.

I woke up Thursday morning feeling pretty horrible.  Fever, chills, dizziness, and worsening kidney pain.  After three days of oral antibiotics, my kidney infection was getting worse not better.  I called my doctor who agreed it was time to head to the hospital.

By the time I got the ER, fever, pain and dehydration had conspired to give me tachycardia (racing heart rate).  I suppose one of the upsides of being really sick is being seen right away.  Despite the crowded waiting room, they found me a bed in the ER straight from triage.

They ran some tests.  Not surprisingly my white blood cell count was way up due to infection.  The ER doctor quickly explained that though they send home 95% of patients with kidney infections, there were multiple reasons he felt I needed to be admitted.  I’m immunosupressed from all the Prednsione I’m on, I have multiple chronic illnesses, the oral antibiotics at home didn’t work, and so on.

So I was admitted.

I received two different IV antibiotics over the next several days.  My veins weren’t happy about it and I went through 6 IVs in as many days.  But overall my stay has been uneventful.  Mostly I’ve been too tired to do anything but sleep.

I had several visitors who helped break up the monotony.  My mom and dad spent the most time here with me.  Sunday I was pleasantly surprised by a visit from two friends from church, Liz and Halee.  Then yesterday an old friend from high school Jenny paid me a visit followed by Christy and Brad from church.

I’ve been waiting this morning to find out the results of my latest tests and was just told they are good to go.  I’ve been discharged!  Yay!

I will go home with oral antibiotics which I will stay on long term to hopefully prevent yet another one of these kidney infections I seem so prone to getting.  It’s getting old – ending up in the hospital every few months from these things.  I’m hoping that these long term antibiotics will do the trick and keep me out of the hospital.