Wait and See

Quit stealing my life you damn Pseudomonas bug.  Even though the bacteria is gone, the aftermath is still going on. This is a cliff note update of the past year or so of my life:
mayo surgery update:

I am still a prisoner in my home, but boy have I learned a lot.  Overall...just accepting and still having to "WAIT AND SEE".
This phrase has been way over used these past years in our family.  Yet, today we still "wait and see".  I notice my last post was over a year ago.  Finally, I am maybe ready to piece something together. Well things have changed and stayed the same.  I am happy to report I am healthier than I was a year ago!  YEAH.  Thanks to some hard work and dedication from my team (sisters doctors parents kiddos amazing husband friends) I took my first trip to Mayo Rochester in December 28, 2013.  Spent time there taking numerous physical and mental tests.  Big fun!  The final decision was made and surgery was set for February 6, 2014.  I was to have a right temporal lobe resection/amygdalohippocampectomy.  (one of the longer words in the medical word I was told.   6 hours, 32 staples, 13 screws and one bad ass question marked shaped scar on my head (I try to feel tough), I awake from the surgery with

We took brain out, not put brain in.  Dr. Britton.  My Neurologist at Mayo told me at a follow up visit when I asked him if I genius.  HA HA.
Now I am realizing I need to make a long term plan to deal with this new life I was handed.  This isn't a 24 hour bug. I have epilepsy and might have seizures for the rest of my life no matter how many meds I am on.  I am on 3 right now.  I have lost a lot of weight, clothes don't fit, don't like to eat, meds make me sick.  They are working for the most part, we still hope for better though.  Some days are good others are not so good  After surgery I went through physical and occupational therapy. My math was easy to the kids..they thought that was funny.  My handwriting is still pretty bad.  Tremors are not fun.  I have pulled away from my friends and my family at times.  I just get so frustrated at times.  I would like my independence back.

We are healing again...a road traveled before...but here we are again...should know how to do this, but it is different again.  harder this time.  Kids have to do it all over again.. they too are struggling to understand why again? cuz mom looks healthy..people don't seem to realize you are not. They ask a lot if I am better.  Hard to reassure, if I don't know.  Don't want to lie, don't want to scare.   Easier to just always say I am Ok.  BUT really ready to know, what do we have leftover from May 2012, when that damn bug somehow got into my brain?

.

 FUN STUFF:

R reminding me I got sick when he was in first grade...
C made a brain in school and gives brain facts for PDR. She is creating brain awareness through her art work.  She branches out of the medical world and drew a beautiful piece that was featured in a local gallery here.  I have to brag about my kids...my only job is being a mom these days.
S doing her plays but struggling with rides.  loves big medical words. how many 15 year old asks for scrubs and a stethoscope for their birthdays?  She has become a HUGE epilepsy awareness advocate!
C/R got science lesson with recent blood draw, we have some interesting field trips...we have learned to live with what we have and not focus on what we don't.  I fall into the trap a lot, I don't like the strange new shape my body has become, but I can't change, so I have to change the clothes I wear.  Yeah, I miss my heals and jeans, but now I am learning the value of leggings
Kids keeps graduating...  now I will have 3 that have graduated during this ordeal.  DANG.

I think about this and ask my doctor if my life will be the same again and he replies with similar comments: "could you do it before surgery?"  then you should be able to do it after, with time... but if I didn't know it before, I still don't.....I don't suddenly know how to play the tuba, haha.


                                                                    W graduation.

I am still telling kids no to activities. We got rid of the cat and are selling the house to be in town to be able to walk places.  Things are better though!  Healing from surgery physical was easy for the most part, mentally it has been a challenge.  I have a great counselor I meet with and my neurologist and nurse here are wonderful.
The last MRI was clean.  Took out all the bad.  Now need another MRI because of some seizure like activity going on.  Have to keep close eye on all this, I think everyone wanted the surgery to be the miracle answer...it was by far the hardest thing I have dealt with in my life and still am dealing with
.
Today is almost Easter of 2015.  Almost a month ago I turned the big 40.  I would have thought that my life would look like it does today.  I am still unable to drive because of seizures.

 Since the surgery, they are MUCH better.  I have might go a even a week without one, that is a good week.  That does keep me from driving though.  It is so hard with the kids.  I can't even explain how much it sucks to not be able to go pick up my kid at school immediately when the nurse calls and says C just threw up and is sitting in the office waiting for a ride home.  I have to track down a ride to go get her.  I hate having to get a ride to my never ending doctors visits because of the crazy weather we have been having.  Let alone planning my life around my driver's life....this basically leaves me with not much of a life.  I spend a spend a lot of time home bound, it is a good thing I like talking to myself.  It isn't all bad.  I would not change having the surgery for a minute.  It has greatly improved my life.  I just would like to get to a point of getting back to work and feeling more like my life has meaning.  Still very lucky overall, I know!  Somehow that doesn't make day to day easier though.
Okay, enough venting.  Good stuff, w is about to graduate now.  The kids are all doing well.  Courtney started her clinicals, almost an RN.  S got asked to be in a play, she didn't even have to audition for the part, she was over the moon happy.  She is playing Rosie in THE GREATEST FAIRY TALE NEVER TOLD at The Verge Theater.  W is enjoying his time at Montana Tech.  D is producing new videos weekly online....

  I got a new tattoo.  A brain symbol on my right hand.  It felt good to FINALLY do something normal to my old me.  It is a tiny start to getting back to normal I hope.  It is purple to match my new hairstyle.

Dealing with daily struggles, but still optimistic!

Even with mental struggles some physical struggles OVERALL....we will prevail. Time to find a new adventure.

Moms have lots of jobs.... My Job: Don't get sick (kori)

So, I have been working on this blog entry for sometime now and I just have been unable to put it all into words.  I kept trying to put my into words how hard it is to be sick and still be raising a family and putting on a smiling face around everyone and just always acting like things are ok everyday even when they are not.  Hating how much you second guessing yourself all the time when you never use to.  Finally, after so many months and my sisters (THANK  YOU Angie and Nicole!) helping to organize my thoughts here it is:
**just ignore typos**


It has been a rough year and a half.  My family and I are now officially looking for a neurologist in a bigger hospital outside of Montana that might be willing to take on this "fluke" case that I have turned into.  We have talked to UCSF so far.  This blog also entails my part of a letter written to different hospitals because, I have no idea who actually reads this blog and maybe somebody knows somebody who knows somebody who is a neurologist/neurosurgeon or works with a larger epilepsy center that would find this interesting and wants to take on this case, you just never know.                  I never give up hope!!

 Over the past year and a half I have come to learn that moms really should not get sick.  It is not fair.  Not that it is really ever fair that any ever gets sick, but this is about my journey an how my sickness has impacted my ability to take care of family, the family that I hold so dear to my heart.  Here is the letter: (remember it was intended to be read by doctors)

"First off I want to thank you for taking the time to read my story.  I will try to keep it short.  The past year and a half has been the most difficult of my life.  Prior to May 2012 I was a busy working mom in my mid-thirties.  My days began with packing lunches and kissing my kiddos goodbye at the bus stop and then heading off to my job as a Head Start preschool teacher, working with low-income families and their children.  A job I didn’t do for money or benefits, but because of the passion I had to help others.  After work it was back home, homework with the kids, dinner with the family and bedtime stories.  In the midst of these days, I volunteered with local Girl Scout Troops, I volunteered with Junior Achievement, I kissed boo-boos, took away bad dreams, drove kids to acting lessons, violin lessons, soccer practices, scouting events all while tending to teenage drama and just lived a typical, crazy, busy life.  I loved it.  In May 2012, I got sick and my world crumbled.  As you will see from my extensive medical records the past year has taken a huge toll on me physically.  As a professional in the medical field, you don't need me to explain how hard and painful having seizures and brain swelling can be.  You don't need me to tell you how hard it is to deal with all the side effects of the various medications I take and how financially, physically and mentally draining they are.  And, I don't even know if they are working.  What I want to share with you is how hard this has been emotionally for me.  How hard it has been for my family, mostly, my children.  These are the things I hope you take from this when you consider helping me.

            As a career woman and mother to six, I used to hold it all together.  Now I can't keep anything straight.  My kids make sure to write their important dates on the calendar because they know I will forget them otherwise.  Even if I remembered to write these dates on the calendar they would be hard to read as my handwriting is not very legible because of my shaky hands.  Spelling is tricky, speech can be a challenge and my vision comes and goes.  As a preschool teacher my job was teaching kids how to hold a fork or point to the red circle, these things are difficult for me now.  As a college educated career woman, it is tough to see these things I worked so hard for to be slipping away.  I can't focus, I lose things, I forget important dates.  All the balls I used to juggle so easily have fallen to the ground.  I miss that career woman.  I miss being a part of a work environment…contributing to the greater good.  I miss being part of a community and helping others.  It is strange being on the other side; being the one asking for help and charity.  I want to be better so I can help others, instead of the other way around.

            As a daughter, sister, wife and friend I no longer have the type of relationships I once had.  I am forever grateful for the help they give me, but asking for help and losing my independence has been so difficult.  I can no longer drive.  If I need a gallon of milk I can't simply pick one up on my way home.  I am 38 years old and if I need milk I have to call my mom to take me.  If my children miss the bus, I have to call on someone in my family to please come and take them to school.  I can't volunteer in their classrooms because that would mean having to schedule someone to drive me every week there and that is just too much to ask.   I miss hanging out with my sisters just for fun and not for filling out Medicaid or Disability paperwork.  I miss going on vacations with my mom or hunting with my husband and dad.  I miss the things I can no longer handle on my own.  My sisters schedule and take me to appointments, my mom and aunt run my errands, and my oldest daughter cooks the meals.  My husband places the 911 calls when the seizures get too scary.  I sit helpless as this all goes on around me.

            The most difficult and heartbreaking part of all of this is the emotional toll it is taking on my kids and myself as a mother.  My children's ages range from 7 to 19.  They have seen more than their vulnerable ages need to have seen.  They have watched me be wheeled out of our house on a stretcher twice now.  They came to see me in the ER on their way to school.  The hardest is the everyday things they see.  What has become their new normal is unfair because we just don’t know what will happen next, because we have NO answers.   My 8 yr old son opens jars for me and is carrying the laundry basket because I can't.  I hear my youngest daughter on the phone with her dad while I'm in the middle of a seizure.  I have to hear their conversation and her telling him "Yes, Daddy she's sitting down" and not being able to do anything.  After the seizure ended having her ask me if I'm okay.  She comes home from school and asks how many seizures I have had that day and if they were big ones.  She is 7.  These should not be her worries upon getting home from school.  They have walked in and seen me laying on the floor…a scary sight for a child.  My oldest daughter is 14 and her biggest concern should be who is going to ask her to the upcoming dance and if she is ready for her Algebra test.  Instead she keeps track of my diet, my medications, looks after her younger siblings, helps them with homework, finds her own rides to activities because she knows I can't do it and is the one comforting the little kids when the paramedics come to our home.  They are missing out on their childhood.  They have had to give up all after school activities like soccer, scouts, and violin lessons.  My son asked one day if I will ever be a "normal" mom again.  This broke my heart.    This is the hardest part of all of it.  I look into their eyes and I see their smiles slowly fading.  They are no longer the happy go lucky kiddos they used to be.  I want to be their mom again! 

            Staying positive is getting harder and harder.  I do it for my family.  I am willing to fight and have been for the past year and a half and I have it in me to continue.  I do everything I am told to do by my doctors.  I do my own research, I am trying to fight.  I want to see my children grow up.  I want to go back to work.  I want to be a wife again to my amazingly supportive husband.   The problem is no one knows what I am fighting.  There have been several medical opinions and countless tests but no one can give me an answer as to what is going on.  It is hard to fight a battle against an unknown enemy.  I need to find someone who can help me figure out what is going on and how to keep on fighting so I can get better.  I want to get better with all my heart.  I want my life back and I will fight for it.  It is disheartening to hear "it takes time", "you will get better" and now be told it is all just slowly "getting worse".  I really just need someone to find it in their heart to fight this battle with me.  Thank you for your time.  Thank you for reading my story and considering going on this journey to recovery with me. "

It just seems to be getting rougher, maybe it is just me.  Maybe I am more emotional these days. (I seem to cry easily these days) One day after school, C and R came home from school and asked if we could donate money to their gym teacher so he could put in a climbing wall in their gym at school.  I tried to hold back the tears, but couldn't.  I haven't worked since May of 2012, I have doctor bills, and medications now and future bills and how do I explain this to a 7 and 8 year old??  They somehow just knew, they just turned and ran down to their rooms and brought their piggy banks and took out some dollars and change to take to school for the climbing wall.  I just love these kids so much.  They are always wanting to help. 
How do I be part of car pool when I can't drive and Dave never knows when he is going to get off work?  That makes it pretty unfair to the other families...we are always the "can you give me a ride?" people.  Yesterday, a note for teacher conferences, came home from school with C, my first thought is, well, hmmmm who gets to go with me.  Really that is Who drives. C calls last week with a tummy ache from school and needs to come home, how to I go get her?  Kids need to go to doctor or dentist.  We laugh about it at times, but it really isn't funny when mommy says "no, that isn't the right answer to a math problem or a spelling word," but really it is.  The side effects of the meds are rough, I am tired, I am cranky, I don't want to eat, I don't want to cook, I sleep too much or too little.  I have 4-6 seizures a day (sometimes despite 3 meds) it is pretty hard on me and the kids.  I have headaches that knock me out for a few hours or even days.  It is just a challenge these days.  I miss helping S run lines for her up coming play and throwing the football with R and reading with C and the pepper eating contests with W, w, and D...oh how I miss those days.  I even miss just being able to clean the bathrooms and go the grocery store alone and cook a meal without making a wreck or injury.  Moms need to schedule a million events and I miss those days.  Moms need to do laundry to wash that one special shirt because "I have to have it tomorrow."
Moms need to find the note in the bottom of the back pack that says "2 dozen cookies needed at school tomorrow".  Moms need to wipe away tears when friends get mean. Moms just are needed.

I know most moms put tooooo much pressure on themselves, but it is all out of love for their family...

See, Moms shouldn't get sick!!

My job: Teach you right from wrong, and then help you realize that even if you decide to do the wrong thing, there will be consequences that you will have to face.



My job: cry when I look back and see how little they all used to be.

My job: cheering for you when you steal the ball from your dad and make the basket!

 



My job: Teach you football cures a lot and Chicago Bears rule.

My job: Cheer on the Packers????

My job: remind the kids to feed the cat (oh and then feed the cat myself & clean the litter box)



My job: Take picture on first day of school and make sure they look like super stars!!!

My job: Love the Tallest to shortest!

 

My job: Make you do funny photo shoots at weddings.

 

My job: understand this?

My job: bake your favorite cake on your birthday every year.

My job: Teach you that T-Rex's would eat cousins....watch out.

My job: Teach you about your great-grandma and her sister and her brother.

My job: Freak out when I think your head fell off.

My job: Teach you how to do laundry.

My job: Tell you this is me.

My job: Let you stay up late at sleep overs with cousins.

 

My job: Cheer you on as your brother teaches you to ride your bike!!



My job: wish with you that we could eat this gummy bear.


NOW......My daily job: trying to get back to this Mom......

"When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child." -Sophia Loren, Women and Beauty 

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.