A little over a month AND a year ago (kori)

It is June 2013 and feel a little in awe.  The school year is over and I am happy to report we survived it.  The kids are all moving forward.  D finished his first semester of at MSU (Go Cats), W will be entering his last year of high school this fall, w is a junior, S survived middle school and is headed to high school, R and C each finished another year in elementary school.  It was a little crazy finding rides to plays and parties and celebrations, but thanks to my drivers and lunch makers we made!!  Thanks!!!



"Shcool is asome" tattoo R gave C at end of the year, they are kinda sad moving on to summer and missing their friends and their amazing teachers.

2nd grade learning celebration!

Three of a kind play performed by the first graders

8th grade celebration.

Well, now it is summer time to start doing fun things.  It is also start of "birthday season" in this household.  6 kids birthday from the end of May to the end of June.  Some years we bundle them some years we do them individual.  This year it so far has been a bundle.

S is becoming a great baker.  Brownies, spice cake, and raspberry lemonade for the BIG boys party.
 

We have been fitting in some fun too (in between MRI's, doc visits, and blood draws).... hanging out with family, friends and the tooth fairy.

1 of 2... Grandma's frozen treats.

2 of 2 Big Brother's floss trick.

W first tattoo for his birthday.

The kids have started enjoying summer.  C and R have been out trying to find worms so Daddy can go fishing sometimes when he is not working. 

No luck fishing today.

"A C for my name!"

Super Dave, driving during the week, Debos on the weekend.
 

So that is where the family sits today, unfortunately today I am sitting back in Denver with my lovely bright yellow hospital gown hooked up to a 24-7 machine to monitor my brain and waiting for Bozeman and/or Billings to send copies of my MRI's down here.  This is a short blog today, hospital's don't let you sleep much. 
I have my flower of hope in my phone from my Aunt/Godmother, she gave it me last May when I first was admitted to the hospital in Bozeman.  It was just a beautiful plant that bloomed all summer long and then I thought it was dead and almost pulled it out of the pot, but found one green piece on it, so pulled off the dead stuff and now it came back to life.  I keep trying to hold back the tears, but this did me in.....

Flower of hope!!

Okay, test time.  Thanks for everyone helping with kids and prayers and just all the overall support.

 In Denver.

Missing Montana.






 

Putting it all together for now (kori)

Well, it has been awhile since I have been able to sit at the computer and attempt to put it all together.  My mind has been very scattered and still is.  I think it is the three anti seizure medications I am on.  I try not to complain, but oh my.  It is like having morning sickness all the time and being dizzy and confused most of the day.  One of the side effects says "like feeling drunk"..yep, but without football or your friends around to laugh with.  So where do we go from here medically, well I thought it might kinda cool to put a picture of my actual brain scan here so we will start with that:



My brain cloud:)



You can see the burr hole here where the literally drilled into my skull, crazy technology we have.

So medically we are looking to head out of here to a bigger hospital for another second opinion.  Like I told the doctor, I had to go to San Francisco to get the shoes I wanted, I might need to go to Denver again to get the surgery or second second opinion I need, Montana is basically good for steaks, skiing, and hunting. I am trying to stay super positive lately and accept that this is my life for now.  It has been an interesting year.  I feel like now I have been through Elisabeth Kubler Ross's stages of Grief:  Denial, Anger, Bargaining, Depression, Acceptance.  It has been a challenge and I want to thank everyone who has helped me throughout these stages.  I really felt like if I didn't talk about seizures or the brain problems to much that they would just go away.  I was living in denial and I am good at hiding things.  I realized this was not a healthy way of living though.  I thought, if I didn't admit things were going on, I could just will it all away.  I was not always telling the doctors what they needed to know.  As soon as they would admit to the hospital I would tell them I was fine just so I could get the heck out of there to go home... DENIAL.  When I got home, I would be angry.  I was angry that this happened to me.  I didn't understand why.  I am a good person.  I am a good mom and wife and daughter.  I volunteer in the community, I pay taxes, I never litter, I don't break laws, I recycle, I really always try to help others, I felt like I was a good person. I was angry at the universe at God, I was angry at people for not understanding, I was just plan mad.  I spent too many hours crying...ANGER.  Then started the bargaining process.  I asked the universe or God if they would heal me I would work harder as a person to be a better person.  I would be more forgiving and be more patient and listen better and eat healthier and exercise more....BARGAINING.  Well, I don't know if that will work or if anyone out in the universe is listening, but that lead to my depression.  I don't think I even realized I was in that state until I am able to look back on it.  I spend more days in bed just sleeping.  I starting questing things in general.  I stopped answering texts.  I had stopped getting on facebook and I didn't even want to write a blog.  I just started having no desire to do anything.  I blamed in on medication and I am sure it has some play into my feelings, but overall, I just didn't want to do anything or see anyone...DEPRESSION.  Well now I feel like I am accepting my new life, the new me for now.  Doctors seem to think I may get betterwith more indepth monitoring and possibly surgery or just rearranging medications for awhile, but if not I think I can accept the new me:

New me: Weird hair that seems to like falling and is much darker.

Old me: Long blond locks.

Old me: Planking for no reason.





New me: pill box to remember what to do everyday.

Even though I don't have the same desire to listen to music and I can't drive or work or be as organized I still can have hope and I am home more to help kids with homework and I have a new appreciation for my family in general.  I know have more desire to learn about my past:

This ordeal has confirmed my desire to want to help people and has also made my kiddos want do the same:

Donating to Locks of Love.


We can't end this without some usual silliness, because overall "A day without laughing is a bad day".

"Ha Ha"

"What do you do if it hurts this much?"

"Ride em Cowboy"

"Pizza the size of my head"

I am thankful still that I have great family who will drive me all over and come over and help me with the tasks I need.  Thank you again for everything.  I am trying not to be a pain in the butt.

And a quick trip down memory lane for my sentimental side:

2008 Christmas!!

2007 Pokemon/beach birthday theme party for s, r, c.  Good times.

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!

~Random Optimistic Frustration~ (kori)

Tomorrow is February 1, 2013...where is the time going?   Dave and I have almost been married for 9 years this coming valentines day... to all of you that know us and our track history, this is awesome!!  That was supposed to be sort of a joke (Nicole, I need that sarcasm font).  Dave and I have found a new level in our relationship over the past year.  It has been challenging and uplifting, scary and happy.  I have seen Dave sit by my side through hours of waiting.  I have heard him advocating for me when I couldn't.  He has listened to me complain and cry and laugh and be sad and scared.  He has helped me find courage when I wanted to give up.  He tries to understand just where my craziness is coming from at times all while saying he loves me and always will.  He makes me feel safe when I need it and forces me to be strong when I need to be.  His hand is always there for me to hold and always just a phone call away. He reminds me to watch my words at times, which is needed these days.  I would be lost without him.  As sung by Eminem:

"I just wanna love ya, for the rest of my life I wanna hold you in the mornin, hold you through the night"



David and Kori sitting in a tree K.I.S.S.I.N.G :)



9th WEDDING ANNIVERSARY
Traditional Anniversary Gift: Pottery
Modern Anniversary Gift: Leather
Travel Anniversary Gift Ideas: Mexico

I guess I should start this off with a disclaimer.  I have spend the last 2 weeks visiting new doctors, being told new and old things, have been trying to keep up on wife, mom, and friend duties and currently have only had 5 hours or maybe even a little less of sleep before writing this, that said there may be some typos or mispelled words, or maybe even an out of place word, or just plain randomness..

C working on homework with George.

My two best friends Donna and Cherri...I am frustrated I don't get to see you as much as last but optimistic that our friendship is strong enough to endure through this long ordeal.  Thanks for standing by my side always.

Cherri and me!!

Referee and coaching pratice for R.

I started writing this post a few different times, but I was just angry and unhappy.  I was writing from the heart, but it didn't feel very productive.  My emotions have been out of whack to say the least lately, but I really keep wanting to focus on the positive.  I deleted that last few posts and never published them.  I don't what to do with my feelings just yet.  Maybe that will be a later post, I don't know.

Let's just say 2013 hasn't been going according to the plan I thought.  It has had it's up and down's already.  I keep trying to stay optimistic but have some pent up frustrations.  We are starting over it feel like.  Routine doctor check here in with an amazing Dr. Meyers has led to a busy week.  She made some calls after spending time with Nicole and I a few times asking questions.  At the wait and see rate we have taken with the Billings Neurologist Group, we are basically doing nothing and getting no where.  I am not getting worse-optimistic, I am not getting better- frustration.  Living in limbo land is rough.  I personally feel that I would like a doctor look at my records, labs and scans and come back with an anwer of what this is and what we will do to fix it.  I am ready to accept anything, good or bad.  I find my self just wanting to know so I can make decisions.  If I was told I had 2 years to live, I would stop somethings I am doing and start doing other things.  I have been "recovering" since May last year....but my MRI looks the same last week as it did before in August, something is not right.  So now we run more tests.  MRI, EEG, Blood cultures and who knows what else. 

This is my new massage and relaxation chair.

Needed a hand to give blood.....





1 vial today, 4 vials tomorrow, 6 vials the next time...I am optimistic my blood will keep replenishing itself.

 

careful of the scar



The tech calls them expensive dread locks.



26 electrodes went here for 2 hours.

And finally the wierd test is over and I have a new hair due!!!

There is Something About Mary...LOL...this wierd conductive cream though.  Basically tile grout.

I now spend my days wondering if I will ever be normal again....then I hang out with my family and wonder if we ever were normal to start with.  They sure have been awesome this year.  My crazy family.  I love you all!!

C

D

  Trying to keep it normal:

W

w

You fit right in Courtney:)

R

Crazy Cousins

oh J..

This just can't be normal.

Can you see the fun we have....I have to get better, I might be the only sane one in the bunch.

Planking in MT...miss those days.  Go David!






 Well, I think I need to sleep now.  I keep hoping for good news and trying not to be scared.  Put on a smile and go about the day.  Frustration:  might need more brain surgery for a biopsy Optimistic:  shaved my head once and hair grew back.  Frustration: need bigger hospital Optimisitic: they will have answers.  As S says: