Multiple Sclerosis...

Yup, I have MS! :)

I was diagnosed in January of 2000 and I have been giving myself shots of Betaseron every other day since then (well, except for when I was trying to get pregnant or actually pregnant) :)

Lots of people ask me what MS is and the easiest way I can explain it is by using the analogy of an extension cord.

The nerve endings in your body are a lot like an extension cord. They carry the messages/electrical "sparks" through them to their intended source to do an intended job like moving your leg, or speaking, etc.

When you have MS, the orange covering on the extension cord wears thin and the messages through your nerve endings start getting lost and either do the wrong thing or do nothing.

Over time, your body heals those thin spots (if you are lucky and have a "good" kind of MS like I do...I have relapsing/remitting). The problem is that each time your body has to heal those nerve endings, you build up scar tissue and that acts like a brick wall for nerve synapses and then things don't heal, which is what causes irreversable damage and loss of motor functions.

You can have "lesions" in several places in your body including your optic nerve, spine, and brain. I'm one of the lucky ones who just has lesions on my brain. Every 2 years, I have an MRI to measure them and see if they have grown.

They have changed a little, but not bad considering that I didn't do my shots very often while Braden was in treatment at the hospital. They make me VERY sick (flu-like symptoms) so I administer my shot right before I go to bed and sleep through most of the worst of it. I do have to take Ibuprofen the next day for extreme headaches and body aches but every other day, I'm good! :)

It's a good trade off. I get to remain mobile and only feel like crap 3-4 days a week as a result. I'll take it!

I have two triggers for my MS, fatigue and heat. I didn't get a lot of sleep while Braden was inpatient for that year and a half, and I didn't want to be sick all night while trying to take care of him so I skipped them a lot. Yea, my neurologist knows and she wasn't pleased but she couldn't blame me. :)

The heat trigger is why I do NOT enjoy summer!!

At all!!

Last summer in Kansas, it was extremely hot and I was in a lot of pain and I was exhausted most days.  It's the first year I've really been that miserable. We detour every day, at least one detour and when it's that hot, we have to detour inside which is a downer. It all works out, but still...frustrates me!

Winter, fall, and spring I'm much more comfortable!

There is the little issue of my balance...it sucks.  Plain and simple. 

I fall frequently and when I tried to go out dancing with some friends, I had a hard time doing Cotton Eyed Joe (which pissed me off) but as long as I don't have to walk a straight line or stand on one leg, I'm pretty much okay!!

Okay...I'm not but I would like to THINK I was...I really have a hard time with my balance and I'm sort of like a weeble...

except I DO fall down!! LOL!!

I only have to visit my neurologist once a year! WAHOOOO!!! :)  That means I'm on the "good" list!

There are a few things that affect me with my MS but for the most part, you wouldn't know I had it!

The way I knew there was something wrong is that I had a band of tightness around my waist, it felt like someone had a great big belt around me and was squeezing it as tightly as they could.

Oh, and...my entire lower body went numb. :) 

I thought it was my back so I went in for an MRI and they told me two things.

1. My spinal column was 90% compressed from a herniated disk and I needed surgery right away. I had surgery 3 days later.

and

2. There were lesions on my brain that indicated I had MS.

Crap!  I could have done without the second one! :)

Brian and I were dating at the time, and I remember telling him that I would completely understand if he didn't want to sign up for this.

He stayed in the game....  :)  Actually, the first neurologist I had explained what "she" had and what "her" options were to Brian while I was sitting right there. I explained we were dating and I was right there...in the room...and after we walked out of that meeting, I found a new neurologist.

Smooth move Dr. Igit!! :)

Outside of the side effects of Betaseron, the big red welts each shot leaves for about 3 weeks, the nastiness on those hot days, and the fact that my balance completely SUCKS, I'm all good!!

I'm VERY lucky!!

VERY lucky.

My neurologist (who I LOVE) said not to even look at any of the scales that show the stats about what will happen to my mobility in the future, she says I'm going to blow them away.

I'm with her...MS is not going to win!!

HOPE! :)

You Saved My Heart...

The other day, I was doing the Evil Twister Workout (described in this blog... http://deliecehofen.blogspot.com/2013_01_30_archive.html)

Braden was home and he wanted to do it with me.

I knew it was a bad idea because even I can't keep up with left hand here and lunge right and...smile..."are we having fun yet?" 

No Evil Twister Chick, I'm not having fun!! :)

Braden tried but when he can't do something, he falls on the floor and cries and says, "I can't do it!!".

Doesn't matter how insignificant whatever he couldn't do was, he is upset because he can't do it!

Then, my sweet boy did what he always does. He got up and tried again.  Then fell on the floor and again said, "I can't do it" and cried.

That continued for some time. I tried to talk him down but there was no fixing it...there never is...

Braden Hofen does not know how to give up.  He will NOT quit trying no matter how hard it is and I'm pretty sure that is why he is still alive today!

Finally, the workout was over and I shut it off. Braden got up, picked up the five pound weights, and with swollen eyes lifted them up and smiled and said, "Look at me, I'm doing it!"

I told him he was doing it and we clapped and hugged and he was smiling from ear to ear.

Then while I was still hugging him he started crying again, took my face in his hands and  he said, "Mom, you saved my heart. I love you!" and gave me one last big hug.

I looked at him and said, "No buddy, you saved MY heart!"

And then he ran off to play.

It's true.

He did save my heart!

Before the cAncer mess, I thought I had things figured out in life.

I had a great career, two wonderful children, an amazing husband, a safe home, and food to eat.

Braden taught me lessons I didn't want to learn. I certainly didn't want to learn them through him having cAncer, but he DID save my heart.

I didn't even know I was missing anything in my heart until the cAncer mess.

Braden taught me how to be strong and courageous. He never quits.

He taught me to live for joy, even on horrible days. See the positive!

He taught me about detours and that life isn't about the places you arrive, it's about the journey!

He taught me to be GRATEFUL for every single day. For every single day!! Even the bad ones.

He taught me to fight and never quit.

He clarified for me that God doesn't give us the bad stuff to punish us or teach us a lesson, God is our salvation and grace. God is our HOPE! God is good all the time!

He taught me to have an appreciation for life.

He saved my heart.

I "knew" these things, but I didn't LIVE these things like I should have until, Braden saved me.

He was 3.

And he has autism.

There's a lesson in that for all of us.

It's not about how old you are or how many education degrees you have.

It's not about money and notoriety.

It's about having a heart that is pure and knows how to truly love others.

It's about fighting for what is right no matter what!

It's about enjoying every minute you have on this Earth because it can all end tomorrow.

Stop, think, love, and appreciate.

cAncer, you lose!!

Zachism Day..#5

Each Saturday, I will share a "Zachism" with you.  Zach is our nine year old and he's pretty funny, and he's not trying! :)

This week, Zach was listening to a commercial and a tune came on.  He said,
"Hey....I know that song!! It's the song that plays at the end of Wreck It Ralph during the credits!"

We've seen it one time,

at the theater when it came out this past year.

One time!

My response was,

"So Zach, what's 8x7?"

We do math facts every single day and he really dislikes it and thinks it's borrrrrrrrring.

My question was followed by a looooooong pause...

followed by , "Heyyyyyyyyy!!!  That's not funny mom!!"

My point exactly buddy...

Exactly!! LOL!!

Happy Saturday!

Snow Days...

SNOW!!!

It's no secret that I ADORE the white fluffy stuff!!!

When I was a little girl, we had horses and my dad would put me on the sled, hook it up to a long rope, and pull my sled around while riding the horse.

It ROCKED!!!

I have some AWESOME old home movies of those fun times!

As we got older, we got an old truck hood.

Yup...

we might be rednecks... :)

And my best friend's dad had a four wheel vehicle...

You know where I'm going with this... :)

The rope got attached to the back of their vehicle, our parents rode in the jeep and we rode on the hood flipped over. We literally slid and whipped all OVER the pasture blowing snow in our faces!

It was SOOO much fun!!

It's was the winter redneck version of water tubing behind a boat.

Our clothes were literally packed with snow by the time we were done but we didn't want to stop!!

We had a BLAST!! The fact that I remember it like 30 years later, should tell you something.

Every time it snows, the looks and smiles of my boys make any inconvenience, well...insignificant.

I still want power, and I want everyone to be safe...but I LOVE LOVE LOVE snow!!

In 2011, I had to take Braden down to the hospital for chemo...normally it's a 45 minute drive, but it took the boys and I three hours one way...it was bumper to bumper, slick and sliding and nuts...and all of us giggled the entire way for the whole three hours!!

The trick was blankets, snacks, drinks, toys, stuffed animals, and battery powered dvd players and i-pods...we had a little party in the car...

while I cussed (in my head) at the freaks on the road who apparently did not learn how to drive in the snow!! LOL!!

One of the things we rednecks used to do was go snow drift bustin'. I lived in a small town in western Kansas where the are no trees except for in someone's yard or along a creekbed. It was very desert-region'ish. The drifts would literally be 6-8 foot high because there was nothing to block the blowing snow!

Mom would never let me tunnel into one because she was afraid I would get buried...I might have tunneled in some far away from the house so she wouldn't have seen.  AND...if I HAD done that, it would have ROCKED!!! ;)

We used to go out in my pickup and smash through the highest drifts we could find.  And if we got stuck, we just fired up the tractor and pulled it out!! :)  Ta da!!!

Well, today, we got about 13-14 inches of the glorious white stuff, and are expecting 1-2 more overnight...

I'm beyond giddy!!

The morning rush in KC looked ridiculous and it was literally a parking lot on the interstate.  One of the news channels was broadcasting when some guy knocked on the window of their vehicle and asked if they knew if a snow plow was coming to get them out...

Ummmm...

I know I'm blonde here, but even if a snowplow came your way when it's bumper to bumper traffic with thundersnow coming down at a rate of 2-3 inches per hour...

I am not REAL sure how a snowplow is going to get thru the parking lot of cars to plow the snow.... LOL!

I was cracking up!! What perfect timing for a live broadcast!! I can only imagine what the broadcaster was thinking when the guy appeared and knocked on the window not realizing they were broadcasting...just keep it Rated G buddy...we don't want to pay any fines!! LOL!

I think he might NOT have been a redneck, or he would have known better about the snowplow thing!! :)

We spent the day making yummy white chicken chili and cornbread and playing in the snow once the rate slowed down.

I watched Zach and his friends dig tunnels and make forts and have snowball fights...

And Braden played in the snow, and shoveled the yard :)  Brian became the sled dog/horse/jeep and pulled his sled up and down the street,

for a REALLY long time!

We didn't venture outside of our street.  Okay Brian did...he went to work out and get more gas for his snowblower (he spent the entire day helping snowblow people out of their driveways). He's a pretty good guy!!  It was about 6-7 hours total in that cold weather...

I'm not that nice.  It's really cold!! LOL!!

I LOVE being snowed in...

with electricity (let me be clear about that lil detail)  :)

No school again tomorrow and we are going to try to venture out to go sledding down the hill, that was the one thing Braden cried for today that we didn't get to do.

SO tomorrow, we will try to make it happen so he can go "WHEEEEEEEE" down the hill.

And Zach can find new jumps so he can catch some air!!






Snow days are for snuggling, spending time together, helping neighbors, enjoying friends, washing and drying snow clothes so you can go again tomorrow, hot chocolate (or hot tea if you are on a stupid freaking diet that doesn't allow hot chocolate but you still lick the spoon after you make it for your kids and their friends just so you can remember what it was like before you had to have hot tea LOL).... smiles and laughter,

and making memories....

maybe I love them so much...

they are really just a beautiful, fluffy, chilly detour!!!

TAKE THAT cANCER!!

The "Boy" Movie...

Oh brother....

Here we go.

I just got a note from school notifying me that Zach's class of fourth grade boys will be watching "the film" in March.

You know...

..."THE film".

And I quote, "a comprehensive K-12 curriculum on human sexuality".

And,as I was reading,  and I came across that sentence,

I almost fainted.

YIKES!!  :)

The fourth grade curriculum focuses on human growth and development.

And I quote,

"the identification of male and female reproductive parts and functions"

Oh boy.....

functions.

I'm having a minor mommy heart attack right now!!

I know...it's time, I get it.

I was a Principal and had to talk to parents about this every single year but...

...somehow...

it's ENTIRELY different when it's MY son!! LOL!!

All I can think about is how Brian and I need to talk to him BEFORE he watches

"the film".

And that pretty much makes me want to THROW UP!!!!

And sit in the corner in the fetal position and suck my thumb!!

I'm SO not ready for my baby to grow up....

...but he is and I have to deal with it.

BUT...

I don't have to like it.

I'm going to need a glass of wine...or 8...before I can even think about how that discussion is going to roll out!!

I'm honest and open and I know we can deal with the questions but...

I don't wanna!!!!!!! :)

I'm pretty sure that one of the topics in the film is wet dreams...

AHHHHHHHHHHH???????????????!!!!!!!!!!!!!!!!!!!!!!

I feel the need to repeat to myself 1 million times, "it'll be okay, it'll be okay...."

but I'm NOT buying it!!

And so it begins...the growing up thing.

I just hope my son doesn't raise his hand the entire movie. 

That's the FIRST lesson I will teach him...

just DON'T RAISE YOUR HAND AND ASK A QUESTION because...

Zach has no filter,

is curious

naive,

EXTREMELY naive,

and is famous for his "Zachisms".

That is NOT a recipe for successful question-asking post "the film" showing!! LOL!

I'm going to tell him to write it down and bring his questions home.  :)

And right now, in Heaven, there is a grandma angel laughing her HEAD off thinking about me dealing with this!! LOL!!

Lord grant me wisdom, clarity, and the ability to not run into the corner and suck my thumb in front of my son. :)

And please Lord, help me limit the use of the words, "girls have cooties, RUN away from them" to 2.4 million times during the discussion!! LOL!!

In the meantime, Braden brought home a cute little picture of a mouse he drew at school...

Thanks for keepin' it real B! :)

That is MUCH more my speed,

and likely the only thing keeping me from completely hyperventilating!! :)

My Mom...

My mom was...

...well...

...a lot like me (or vice versa)! :)

She was strict, no-nonsense, and pretty freaking funny (on the right day)!! :)

She was the one who took me t.p.'ing on Halloween for the first time!!

 

I never was late getting home because I didn't want to face her wrath, my curfews were early (11:00), and she tracked the mileage on my car to make sure I wasn't going places I shouldn't be going. I lived in a small town so if I went anywhere, she heard about it!! We didn't need GPS devices!! LOL!

Loretta Grace Nelson was an awesome mom and I loved her very much...

and we also clashed like the Titans because we were so much alike!! LOL! She was the Irish one in our family and I am the only one of the three of her children who got that gene. My brothers are like my dad...laid back!!!!

In December of 1983, my mom started acting crazy! She was talking like a nut and acting really insane. She grabbed her car keys and headed for the car. I stood outside the driver's side door trying to convince her to come back inside when I realized, she was going to go no matter what I said so I jumped in the back seat of the car very quickly. She tried to drive off with me half in and half out of the car. I climbed over the seat to the passenger's side front seat.

She wasn't making any sense. My mom didn't drink but I thought maybe she was drunk (I had just turned 18 and it was my senior year of high school). I kept asking her to stop and let me drive while asking her why she was acting so crazy!

She drove into town (we lived in the country) and started heading downtown...we flew through MANY red stoplights and finally I reached over and threw the car into park while we were slowed down at a red.

My mom threw it back in gear and started again, so I crawled on top of her and drove us into a parking lot of a bank, hit the brake, shut it off and grabbed the keys.

I got her talked into letting me drive us home, which I did and we walked back in the house.

These were the days before cell phones. I used the house phone to call my dad who came home from work.

We happened to be renting a house from a doctor and the doctor was down at the machine shed near the barn we were keeping our horses in so my dad went down to get him.

Mom started talking really crazy again and stood up and then she fell to the floor and had a seizure.

I called 911 and held my mom while turning her on her left side as the dispatcher told me to do.

About that time, my dad and the doctor walked in.

A few minutes later, the ambulance got there. They worked on mom and then everyone left. I sat in the living room shaken.

I got the keys to my pickup and went to the hospital after picking up all of the trash from the paramedics because I knew my mom would have a fit when she came home and found trash on the floor!

I was a "newbie" to the medical world, I didn't know she wouldn't be home that night.

They did a CT scan and determined that mom had a stroke and after several days, she came home and began the process of learning how to speak, walk and use her hands again.

We got through Christmas but mom still wasn't acting right. In April, she fell asleep in her chair while cooking supper and burned everything. My mom had NEVER burned a thing!!

Dad took her to the doctor and they did another CT scan. It showed a mass. My dad and mom went to Topeka for exploratory surgery to find out what it was on April 11, 1984.

I was working at a private Catholic boys' high school washing dishes, stocking shelves, serving food, and cooking sometimes.

My dad was the County Extension Agent and the Home Economist came into the kitchen where I was working and asked to talk to me.

She told me that they had opened mom up and found a brain tumor that was so extensive that they could do nothing for her.

I was dating a guy who was a freshman in college at the time and he came with me to Topeka (about a 4 hour drive). I kept it together really well until about an hour outside of Topeka when I got crazy dizzy and had to pull over, then he drove. I think that's when it sunk in that she was going to die.

We walked into the hospital and I went into mom's room and she opened her eyes, smiled, and said, "Hi Weesie" That was what my mom always called me.

I had watched my grandparents dying, and had gone through enough to know that my mom's protocol was "you never cry in front of them" so I stayed for a bit and then they kicked me out of her ICU room.

I cried then.

The doctors said they would do radiation to increase the quality of her life, not the quantity.

We brought mom home and dad and I took care of her.

She said she wanted to live long enough to go to my high school graduation...and she did. My mom came in a wheelchair with her wig on. She already could not speak but she was happy.

Dad and I cared for her as the cancer slowly overtook all of her body and functions. I remember the day that the hospice nurse asked if we wanted her to die at the house or in the hospital. We chose the hospital.

The last time I saw her alive, she just stared at me. We just looked at each other and I talked to her. She ripped out her IV line and blood went everywhere. The stupid nurse came in and said, "I wonder if she's trying to tell us something.."

I can't repeat what I said.

I'm pretty sure my mom smiled again!!

The night before she died, I had a dream.

In the dream, she was asking me to come see her because she was lonely and she wanted to see me.

I told her that I would be there in the morning but first I had to help with the 4-H booth at the sidewalk sale.

Then I had a vision of her floating and smiling and she said that she was okay, she was free and not in pain and she told me that she loved me and I told her that I loved her.

I woke up and was absolutely terrified because I thought she was dead. I could not move and I laid in bed for 3 hours until the sun came up.

July 19, 1984, I went to the sidewalk sale to help with the booth as planned (literally two blocks from the hospital). I was going to go to the hospital to see her after my shift ended at 11. My dad's secretary came to the booth to get me long before that.

She told me mom had died.

My mom very much believed that angels live around us and they are a part of our lives. And I KNOW that she has been a part of our lives through all of this cAncer mess!

Sometimes I just "know" stuff and I listen to that gut feeling and intuition. I have always (and will always) believed that it's mom trying to help me.

She is very much  a part of our lives, but I so wish my boys could have had her in their lives here on Earth.

My mom and my daughter, Miranda, are our guardian angels and we are blessed to have them protecting and guiding us.

My mom has been watching and smiling from Heaven for every big event in my life, but I would give anything to hug her and look into her eyes one more time and tell her that I love her face to face.

Everything is perfectly timed and the lessons I learned while taking care of mom as she died have served me well while taking care of Braden.

I am a very lucky daughter to have had a mom like mine!!

Zachism Day, #4

Saturday is Zachism Day. He is our 9 year old and he says the cutest and funniest stuff without even trying! :)  Today's Zachism is just sweet!

The kitty had some surgery the other day.

(He doesn't like to talk about it, it's "personal"! :) )

We delayed telling Zach because we knew he would worry and be upset.

He's a VERY tender-hearted kid.

The morning of the surgery, we explained that Indy was going to spend the night at the vet's.

Zach was fairly hysterical,

and the only thing that made him feel better is that our former next door neighbor was our vet and he would be taking care of him.

When he realized he was going to spend the night at the hospital, he wasn't happy but he said,

"As long as Mr. Les is watching him, I can let him go. The kitty will ALWAYS be home in my heart!"

Pretty sweet moment!! :)

Love that kid!!

Happy Saturday!