Thursday, October 24, 2013

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 

Friday, June 28, 2013

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.









 

Monday, April 29, 2013

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.


Thursday, February 14, 2013

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!