Even as I listen to the alarms of my own monitors, angry that things still aren’t quite as they should be, today I just feel so grateful to be alive. Life is so precious and short and wonderful. I feel so lucky to be breathing on my own again. It’s the little things you so easily take for granted.

Overall I’m feeling much much better. I am breathing all by myself after a week of needing a ventilator to breathe for me due to my autoimmune disease paralyzing my breathing muscles.  I’m now out of the ICU. YAY! My double vision is also much better and I am moving all four limbs again!

I am having some high heart rate issues today (with some chest pain and shortness of breath), and I’m possibly brewing another infection somewhere.  So I get to look forward to more tests tomorrow. Fun times!

I am still hopeful though that I’ll get out of here to some degree of soon(ish).

Thank you everyone everyone everyone who has been there for me! This has been a very very scary experience for me and my family, so whether you’ve come to see me or written me a note, signed a card or just kept me in your thoughts and prayers, it all has been so very much appreciated by all of us!!! I love you all and miss you so much!!

I have multiple autoimmune diseases that have made me really sick over the years.  But got a bad skin infection (cellulitis) last week and ended up in the hospital last Friday mostly because I have so many complications including being on a lot of immunosuppressants.  The infection is mostly better now thanks to strong IV antibiotics, but the whole ordeal has triggered my autoimmune brainstem inflammation which is giving me severe double vision and problems moving my left leg.  I am now getting really high doses of IV steroids to try and stop this.  We’ll see how it goes….  Healing thoughts and prayers are most most welcome!!!!  I love you all!  ♥

Please post any questions you have in the comments!

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!

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.

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 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.