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!

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Post tags: ARGFest, Baptized, blessing, blog, Busy, caregiver, Christianity, Chronic, Chronic Illness, Church, church of jesus christ, church of jesus christ of latter day saints, clear liquids, Conference, energy, feeding tube, games, hope, hospital, illness, jesus christ of latter day saints, Latter Day Saints, LDS, life, living my life, pain, patient, picc line, Religion and Spirituality, walk, walker, WALKING

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.

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Post tags: amber, art, Aunt, blog, brain, brain stem, cause, center, confusion, consecutive days, count, cousins, definitive diagnosis, Demyelinating Diseases, diagnosis, doctor, emotional moment, ER, Faith, flowers, heart, help, hospital, inflammation, Lauren, Lauren Soffer, LDS, life, midst, mom, moment, Neurological Disorders, patient, place, poetry, relationship, relationships, script, silent scream, soffer, time, title, transition, type

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.

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Post tags: ADD, alternative medicine, art, blog, boundaries, brain, brain stem, case reports, chase, Conditions and Diseases, dad, different path, differential, doctor, ER, Fear, feeling, feelings, gong, great unknown, health, health an, hospital, impasse, inner psyche, Internal medicine, internist, isolated case, life, little girl, Medicine, medicine doctor, multiple sclerosis, Neurological Disorders, novel, patient, Physician, scientific method, stress, struggle, title, treatment

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!

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Post tags: autoimmune, autoimmune neurological disease, Better, choices, Chronic, cognitive abilities, Conditions and Diseases, dark and light, Demyelinating Diseases, disease, double vision, eye patch, Faith, health, health problem, hope, hospital, infection, left leg, legs, life, multiple sclerosis, Neurological Disorders, neurological problems, neurologist, Neurology, patient, permanent damage, pirate, positive attitude, situation life, symptom, time incident, two choices, two ways, Visual perception

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.

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Post tags: allergy, Antibiotic, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Better, clear liquids, comfort, Conditions and Diseases, consciousness, couple days, Digestive Disorders, doctor, Doctors, doctors and nurses, ER, Faith, family, feeding tube, feeling, flickr, friends and family, general anesthesia, God, hard time, healing, health, help, hospital, ICU, inner strength, Kidney, kidney infection, latex, life, liver, liver biopsy, liver function, liver problems, machine, Nasojejunal, nasuea, nausea, nightmare, novel, nurse, nutrition, oral antibiotic, pain, pancreas, patient, place, Prednisone, Recovery, Small intestine, small intestines, time today, title, tomorrow tomorrow, tube feeding, week

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.

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Post tags: Antibiotic, appetite, attempts, autoimmune, autoimmune pancreatitis, blog, bruises, Church, doctor, Doctors, ER, Facilities, family, flare, flickr, health, hope, hospital, infection, ivs, Kidney, kidney infection, life, Medication, medications, Medicine, nightmare, novel, one day at a time, pain, patience, patient, Peripherally, picc lines, place, poem, Prednisone, severe upper abdominal pain, specialist, steroid, title, treatment, upper abdominal pain, vitals, week

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.

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Post tags: autoimmune, autoimmune disease, autoimmune disorders, autoimmune pancreatitis, awareness month, central nervous system, Chronic, chronic autoimmune disease, Conditions and Diseases, diagnosis, Digestive Disorders, disease, dry eyes, dry mouth, Dysfunction, ER, extreme fatigue, Fatigue, flickr, gastrointestinal system, glands, hallmark symptoms, health, help, hope, illness, joint pain, Kidney, kidneys, liver, Medication, medications, mind, Numb, numbness, pain, pancreas, paralysis, patient, risk, seizures, severe pain, sjogren, sjogren s syndrome, sjogren's syndrome, symptom, Syndrome, syndrome awareness, tampons, walk, walker, wheelchair, white blood cell, white blood cells

I’m sweaty and running a fever.  I haven’t washed my hair or shaved my legs in days.  But there are some things you can do to maintain your sense of femininity while in the hospital.

1. Sponge Bath

   No, its not a the same as a shower, but having the nurse help you with a quick sponge bath can help you feel refreshed even if you aren’t feeling well.

2. Shampoo Caps

   These Shampoo Caps allow you to wash you hair in the hospital without ever leaving your bed.  I’ve used them countless times during long hospitalizations to get my hair feeling and smelling clean again.

3. Deodorize

   This may sound extremely basic, but using a little extra deodorant has helped me feel and smell a little more ladylike when I wasn’t up to a sponge bath in the hospital.

4. Nail Polish

   I’m not really one to polish her nails at all, but having a friend or family member give you a manicure or pedicure while you lay in your hospital bed can give you a much needed sense of ladylike pampering when you aren’t feeling you best.

5. Girly Attire

   One size fits all unisex hospital gowns don’t really make me feel like a lady, but if you are allowed you can bring your own more feminine pj’s from home.  You can also buy designer hospital gowns like Dear Johnnies that specialize in better hospital gowns for women.

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Post tags: Better, countless times, cure, dear johnnies, deodorant, Deodorize, designer hospital gowns, ER, family member, femininity, fever, health, help, hospital, hospitalization, Hospitalizations, infection, Kidney, kidney infection, legs, manicure, Medicine, nail polish, nails, nurse, patient, pedicure, running a fever, shampoo, sponge bath, vengeance

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.

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Post tags: Antibiotic, antibiotics, Better, blood cell count, Chronic, Chronic Illness, chronic illnesses, Church, Conditions and Diseases, dad, dehydration, doctor, ER, fever, fever chills, Genitourinary Disorders, heart rate, help, hope, hospital, illness, illnesses, infection, ivs, Kidney, kidney infection, kidney infections, kidney pain, Medicine, mom, mom and dad, oral antibiotics, pain, patient, racing heart, sleep, tachycardia, triage, waiting, waiting room, white blood cell, white blood cell count

Fear that I will end up back in the hospital.

Fear and OCD are a bad combination.  It’s bad enough to have a fearful thought in your head, but with Obsessive Compulsive Disorder you just can’t forget it.

I was woken by pain on Monday morning at 6am.  I felt like I was being stabbed in my left lower back and side.  An all too familiar pain.  The pain of a kidney infection.  AGAIN.  I’ve had far too many kidney infections the last few years.  Several of them have resulted in extended hospitalizations of a month or longer.  So to feel this familiar pain filled me with dread.

That is how the fear started.

I called my doctor as soon as the office opened.  He opted to put me right on antibiotics over the phone.  The first day was truly miserable.  I was in so much pain and my breakthrough pain meds were barely taking the edge off.  Yesterday I seemed to be feeling a tiny bit better.  But today I spiked a fever.

Not good.

Now the fear was escalating.  This infection was not heading in the right direction.  Instead it was following the well worn path that leads to the hospital.

I called my doctor who had me go get a urinalysis done to see where the infection is at.  I’ll get the result tomorrow.  The culture won’t be back though for a few days.

Now I wait and try not to let the fear take over.  But my thoughts are wanting to spiral out of control.

Kidney infection leads to hospital.

Hospital leads to latex exposure.

Latex exposure leads to anaphalaxsis.

Anaphalaxsis leads to another stay in the ICU.

Not fun.

Not fun at all.

Mental illness can sure make it more difficult to deal with a chronic illness.  But I’m trying to calm my thoughts.  Trying to channel my OCD into other happier obsessions.  But really I just want to cry because, though I try, sometimes I just can’t put a happy spin on life with a chronic illness.  Sometimes it’s not inspiring or uplifting.  Sometimes there’s no bigger picture.  Sometimes there’s no underlying lesson to be learned.  Sometimes it just sucks.

Sometimes I’m not a novel patient.  Sometimes I’m just a scared girl who doesn’t want to end up back in the hospital for the umpteenth time.

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