Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

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.

As I round out a total of TWO weeks spent in the hospital with this kidney infection nonsense, I thought I’d take a moment to share how I’ve kept myself from going insane with boredom.

1. My first line of defense is and will always be the computer/internet.  Chatting on IRC, AIM, gtalk, YIM, etc with my friends is the best way to spend hours and hours AND not feel lonely at the same time!  The best part is my friends live all over the world, so usually at least one of them is always available if I need to vent or just want to chat.

2. There is nothing like a good book.  Reading has always been a favorite past time of mine.  I’ve been immersed in the Dune series during this hospitalization.  Getting wrapped up in a good book lets me forget my own troubles for a while and be someone else and somewhere else.  When I finish Dune, I plan to read my first ebook on my iphone!

3. And now for some mindless entertainment… Computer games!  I love playing little free flash games especially of the point-and-click and escape variety found in vast quantities on sites like Jay Is Games and LazyLaces.  But I was feeling the need for something a little bit more hard core, so I installed Fable on my latptop and have been playing that when I’ve been bored.

4. Visitors are the best!  When you are in the hospital nothing can replace human contact.  It quickly becomes very lonely in those isolating hosptial rooms.  My mom, dad, sister, and caregiver Melissa have been here most days to keep me company.  Their presense has been a huge comfort and I am very grateful!  Also the hospital has volunteers who sometimes come around and talk to you.  I spent a half hour with a very nice volunteer the other day.  It was really nice to have someone new to talk to.

5. Yesterday Melissa lugged a TON of my scrapbooking stuff to the hospital so I could partake in my VERY favorite activity!  It’s so nice to be creative!  I was exhausted by the time I finished just two pages (even with lots of breaks), but it was well worth it!

6. Finally when I’m totally out of ANYTHING else to do, I can always write a blog entry… or heaven forbid work on my novel !

In other news, I was hoping to go home today, but it doesn’t look like I’ll have the IV antibiotics I need to recieve at home setup in time to go home today.  My doctor thinks I’ll at least be going home by Monday though!  Yay!

I just need to vent.  Feeling a bit sorry for myself.  I’m just so frustrated and tired of how things are going!  I’ve been in the hospital a total of 2 weeks with this kidney infection now.  I’m only 25 years old but my health is just completely in the toilet.  I’m so ill I need a full time caregiver and am in a wheelchair.  I can hardly get out of bed most days.  I feel like the example for every possible complication of Sjogren’s!  Between the AI pancreatitis and the AI hepatitis and the brain inflammation wreaking all sorts of havoc.  Then there’s the arthritis which has me in a wheelchair that I wonder if I’ll ever get out of.

I’d say I’m too young for this, but obviously I’m not.

I’ve lost most all my friends to being sick.  None of them wanted to deal with it.  They are busy leading their lives and don’t have time or the desire to see or talk to me.

I’m tired of being such a financial and time burden on my mom.  I feel so physically helpless and I miss my independence terribly.

Most of the time I put on a cheerful face and make the best and even find the positives of this bad situation, but right now I just am feeling really angry and frustrated and needed to let it out.  So thanks for listening.

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.