What to wish for (kori)

This is a little long and wordy...less pics more words.  More cluttered...less organized.

VHS..yep!

So, back in 1990 a Meg Ryan and Tom Hanks movie (by no means a hit movie..lol) came out and I remember going to the theater in Helena to watch it.  I believe it was spring break or something like that because my sister's and I were staying at a cousins house and I remember being so angry that I had to be away from my then boyfriend for what seemed like forever.  Teenage girls can be so dramatic....I should know I was one, had 2 sisters and am now in the mist of raising one.  Yikes, if my  hair wasn't already falling out, I might be pulling it out.  OK, S is not that bad.  She is actually amazing and has been strong a supportive and between the two of us, we can talk about anything and cry together about anything.  I don' t lie to her, which was very hard last week on my last doctor's check up.  OK, wait I am getting ahead of myself...back to Meg Ryan and Tom Hanks.  Meg Ryan is my all time favorite actress and she has multiple roles in this movie (that I still own on VHS)... after my last visit with awesome Dr. Meyers here, she sent us to Neuro, ID, Radiology...I mean I got the works...and even a VIP trip to the ER!!  Yippee.  Never hurts to get a second opinion right?

 Patricia: "You mean you were diagnosed with something called a brain cloud and didn't ask for a second opinion?"  (movie quote)

Well, so this is the second neurologist office I have visited.  Have been to three Neurologists, a Neuro PA and a Neuro FNP and 2 ID docs..they all can say the same thing.."there sure is a lot swelling on your right temporal lobe."  We don't know what to think.  This new doc at least wants to take the team approach instead of the "wait and see approach".  It was reassuring to hear him say that I was not crazy to feel scared when other doctors told me that if they put me on a super high dose of steroids, either nothing will happen or this infection will blow up.  I was starting to think I was crazy. 
I got lucky, some beautiful side effects from Cushing's syndrome, (http://www.mayoclinic.com/health/cushings-syndrome/DS00470/DSECTION=symptoms)
sounds fun huh, but no huge flare up.  The crazy thing is, my "brain cloud" (I named it now since it has no official medical terminology/diagnosis other than consistent vasogenic temporal lobe edema, which is too much to remember and the MRI image makes me think cloud.) looks the same in every MRI for the past few months.  Not getting worse but at the same time, not getting better either.  Now I start getting frustrated.  You mean I have been staying home "recovering" every day since last June and it hasn't gotten better?  WTH?  Now I may have developed right temporal lobe epilepsy, oh goody that sounds fun to live with.  I know I am just supposed to be "happy to be alive", but hearing that is getting as old as "you're a medical mystery".  NO, I am frustrated.  NOW I get to have my few minutes of venting.  I am waiting still to hear back from so many people it feels like.  Sent all my medical records to John Hopkins for second opinion, they did respond quickly at first and re-read all my scan, unfortunately my family science degree does not help me decipher radiology reports.  Currently they are reviewing my file and deciding if it is worth their time to give me a second opinion.  Like I have nothing but time, which I guess I really do have just time on  my hands.  Just waiting to see if/when I have to go to a bigger hospital (Seattle I think was mentioned).  Seriously, last week 2 amazing Neurologists walk into my hospital room and I hear 4 words, Seattle, Marines, and Neuro-Oncologist team.  It is like living a real life episode of Charlie Brown.

Good thing Nicole and Dave where there to listen.

Another frustration currently.  So was told in August that I needed to take a leave of absence from work because it was crucial not to get too stressed and stay fairly low key.  You know what is not low key and is stressing, trying to figure out how to keep a mortgage paid, food on the table, bills paid, our business running all while being maybe asked to go to a bigger hospital at some point.  Our house wasn't supposed to be a stressor, we bought it when we both had good paying jobs, now, not me working no job and him trying to work 2 jobs arrrrggg.......OK, I won't vent about money anymore.  At least Dave and I are in this together.  Thick or thin.  9 years ago today!  Sickness and in Health, Richer or Poorer...who knew all four would happen to us in 1 year...LOL. 

Wishing on a star...or the moon!

I don't know what to wish for anymore.  Originally, I just wished and prayed to survive this crazy brain infection and make it home for D's graduation.  Then I wished and prayed to survive the next round of antibiotics.  Then I wished and prayed for financial strength and for the kids to be strong enough and resilient enough to over come all this.  Now, today, I don't know what to wish for.  "Don't wish your life away."  One of my dad's best friends, Paul Jesswein, used to always say that to me.  He told me one day I would wake up old and it would all be gone.  I don't know anymore.  I am not wishing for my life to go away by any means, but mostly I just don't know what to wish for anymore.  I want to wish for the old me to be back, to go back in time, but I know that can't happen...so I am going to attempt to grieve the loss of the old me.  I am still here, I look a little different, I act a little different, past Kori is gone, going to have to get to know new future Kori, but that's another blog to come.  Done venting!!  Trying to stay of medical recap, because I have heard people asking.
Last week I was having some partial seizures, only I didn't know what they were at the time.  I told Dave what was going on and he called the doctor and they changed some dosing on my seizure meds.  I wasn't concerned really.  I feel like for the past 6 months I have had side effects and unexplainable pain in weird places and just all over unanswerable questions all while under the presumed assumption that I am getting better.  No big deal.  Wednesday at the crack of dawn we head to the "followup visit" with Neuro doc and right in the middle of the appointment, I have one of these seizures.  (Nurse told me, couldn't have had a seizure in a better place) Quick change of plans, wheel chaired me to the ER, had an MRI and they admitted me for the night.  My favorite place!  It was great when the phlebotomist walks in and says "Hi, Kori" and then tells his helper, "Careful, she is is a tough stick.".  Now, not only do they know my name, I have a reputation.  I remember back when Dave and I used to walk in the Hide-A-Way Lounge here for Monday Night Football or Thursday Night Football and the guy at the front always said, basket of garlic cheese fries with ranch and ketchup to stay and we walked to the back and they would get us a Bud light and a vodka diet.  Well, those days are over.  Old life vs New life. Memories, of Cheers:

"Making your way in the world today takes everything you've got.

Taking a break from all your worries, sure would help a lot.  

Wouldn't you like to get away? 

Sometimes you want to go

Where everybody knows your name,

and they're always glad you came.

You wanna be where you can see,

our troubles are all the same

You wanna be where everybody knows

Your name.

You wanna go where people know,

people are all the same,

You wanna go where everybody knows

your name."

 In a way, I guess there is some peace in know thing the nurses and doctors know you and your history.  You don't have to retell your story or try to earn their trust and when you say, use my hand not the arm for a blood draw, they listen.

This is getting way longer than I expected, but guess I have nothing but time...LOL.  I want to jump back quickly to what I said earlier about not telling lies to my children.  When they whisked me to the ER I knew I would have to tell my daughter what was going on, she is the one in charge alot right now.  I refuse to lie and tell her everything will be fine and I will be ok, cuz no one actually knows that or has even said that.  I just tell her I love her and am proud of all her hard work, cuz that is no lie.  That is what I tell all the kids.  They also know babies do NOTcome from storks.  ;)  They know children from so called "broken homes" as the world likes to state it are not all destined to be failures.  Smart strong kids we have.  And always a little silly!

SCRWD family!

Thanks for letting me vent!