Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.

After spending a total of 2 weeks in the hospital, I finally made it home on Friday!  Yay!  I’ve still been getting IV antibiotics at home twice a day for a total of 10 days.  But it is GOOD to be home.  There’s nothing like your own bed after the horribly uncomfortable hospital ones.  There’s definitely nothing like cuddling with your dog in that said bed.

The power was out yesterday and I found myself struggling (sadly) for something to do.  So I painted this picture of a Healing Growth Tree.  Rather symbolic.

Just a quick update to let you know I’m alive.  I’m back in the hospital since Thursday.  My fever came back and my pain got worse, so I was readmitted.

We’ve been trying to figure out the right combination of antibiotics to kick this kidney infection I have.  It just is being really stubborn.

In the meantime, I’ve been dealing with the normal hospital drama.  Allergies and latex intrusions.  Things not happening in a timely fashion or at all.  For instance, I’m fresh out of IV sites.  I’ve had 12 IVs so far.  And number 12 is hurting.  My doctor ordered a PICC line for me yesterday.  I still haven’t received it.  So now I might need to get IV number 13 just to keep getting my IV antibiotics.  IF they can find a place to put IV number 13.

But I’m hanging in there.  Trying to stay postive.  Because what else can I do?  Right now I’m looking forward to take out from my favorite restuarant for dinner.  When your in the hosptial its the small things like that that make a big difference.

I am thankful for internet access and my laptop.  They are keeping me sane.  I am thankful for my own pillow.  I am thankful I’m not even sicker than I am.  I am thankful that I like my doctors.  I am thankful for my mom and sister and dad and caregiver Melissa who have been visiting me so I don’t get too lonely.  And I am especially thankful to all my online friends who keep my company 24/7 and are always there when I need them!

Being in the hosptial sucks.  But it does put things into perspective.

I’ve been battling a presumed double kidney infection for almost a week now.  Horrible back and flank pain.  Burning.  The whole deal.  I’ve been on two different antibiotics and neither was working.  I went back to the doctor today to reevaluate everything after waking up with a fever and chills, and my doctor said the dreaded word: hospital.

So after navigating the ER, I’ve finally made it up to my own room.  Had my first dose of IV antibiotics and pain meds.

I have to wonder if I would have had this infection at all if not for the Rituxan suppressing my immune system.  But I suppose that’s kind of irrelevant at this point.

Though the downside is I’m in the hospital (a rather large downside)… I’ve been terrified since I got this infection that I’d end up here.  The up side is I can stop worrying.

I’m only supposed to be here for 3 days.  But these things have a way of dragging out.  However, I’m keeping my fingers crossed that I’ll be out of here by the weekend as promised.