They Said I Might Have a Brain Tumor...

This fall, I started noticing weird problems with my vision--not so much so that I was super concerned, but enough that I took note.  It was just sorta blurry around the edges of my vision and something was a little off.

"My prescription must be changing," I thought.  "I might need to call for an eye exam."

I was noticing other things too.  I was having really frequent headaches.  I found myself popping ibuprofen most days, sometimes multiple times a day.

"I'm a busy, tired mom who doesn't take good care of myself," I reasoned.  "I just need to get more sleep and drink more water."

But then it was weird stuff like dizziness and pressure changes when I stood up--the world would go sorta dark for a moment.  And I felt pain behind my eyes, in my eye sockets, a lot of the time.

"Do I have sinuses right above my eyes?" I asked Ryan one morning (because obviously a dentist would know this...ha!).  "I feel like I have clogged sinuses right in the back of my eye sockets!"

He sorta shrugged and left for work, probably thinking his wife was insane.  Which I am.  I am definitely a hypochondriac, so I can't take myself too seriously when I have medical concerns, and neither can he.

So I just kind of ignored all of these weird things, but then one afternoon I decided to call the eye doctor about the blurry vision stuff, and when I started describing all of the other symptoms, they said I should come in right away--which honestly surprised me.  And worried me a little.

So I zipped right in there, and sure enough, when the doctor looked in my eyes, it was what he suspected: my optic nerves were extremely swollen.  This can be a sign of two things: Idiopathic Intracranical Hypertension (IIH) or a brain tumor.

He assured me right away that it looked like a textbook case of IIH, which is basically unexplained increased pressure in the skull.  It causes extreme headaches, and it pushes on the optic nerves which causes vision problems, and if it goes untreated, it can cause loss of vision and eventual blindness (horrifying!!).  But it is treatable, and we had caught it early enough that my vision hadn't been compromised.  (See! It pays to be a hypochondriac!)

But since all of the symptoms also mimic a brain tumor, obviously they had to rule that out immediately.  I was scheduled to see a neurologist and set up for an MRI and a spinal tap.  Just a tad overwhelming, particularly for a girl whose mother died of cancer.

I drove home in a tearful blur.  When I pulled into the driveway, the kids were playing outside with Ryan, and Sally ran up to the van calling, "Mommy!  Mommy!" and waving with such delight, and I just lost it.

In my heart, I didn't think I had a brain tumor--but all of the sudden, life just felt so fragile.  I just cried and cried thinking, What if I did have a tumor?  What if I got cancer and had to leave her?  Or what if I lost my vision and couldn't see her anymore?  What if I couldn't see that sweet face and that little dimple and that twinkle in her eye?

Sometimes life just feels heavy.  This year has been heavy.  With my sister's extreme depression (she has been doing Electro Convulsive Therapy since the summer, and it has been so difficult), Katie and Drew's divorce, and now this sudden diagnosis...it just felt like, what's next??

The next few weeks were rough.  The MRI was so hard for me with my anxiety--the enclosed space, the loud noises while in the tube, the expectation to lie perfectly still, the fear of what they would find in the scans.  Right when the MRI tech put me in the tube, I actually panicked and asked him to pull me back out so I could take a Xanax.  Not even kidding!  (Remember the Xanax that I didn't take on the airplane to South Africa??  Hahaha!)

Then the spinal tap...NOT comfortable.  These past few years when I have found myself in hospital beds for my various fertility issues, getting poked and prodded, I find myself feeling this resigned sort of patience and humility, but also this sadness and lack of humanity almost.  And I always think of my mom and wonder how on earth she did it for so long.

Fortunately, the scans came back clear--I don't have a brain tumor.  So thankful!!!!  But the IIH isn't a picnic.  They think the pressure in my skull has been building over time for a couple of years.  So it's going to take a while for the pressure to come down with medication.

As grateful as I am for modern medicine, this is a devil drug.  It makes me nauseous and extremely fatigued.  I often fall asleep with Noah at 8:30 p.m. and sleep through the night--for a night owl like me, that is unheard of.  And even after all that sleep, I never feel rested.  I am always so tired.

The medicine also makes me feel anxious and depressed.  I have not been myself lately, which is so hard.  I always struggle with anxiety and depression this time of year, but the medicine has made it even worse.  The months of November and December were a bit of a blur, as I tried to do the holidays, the fundraiser for South Africa, and motherhood/ life while my body adjusted to the drug.

The good news is, they don't think I will have to take it forever.  Despite the crummy medicinal side effects, the condition itself is responding well to the medicine, and the pressure inside my skull seems to be decreasing.  My optic nerves are less swollen, and probably by summer I can try weaning off of it and see if the pressure in my skull stays down.

Unfortunately, we can't try to have another baby for probably another year to make sure that things stay stable (we were hoping to do IVF again this month, but that is obviously on hold indefinitely), so that was super disappointing--but I have sort of become resigned to the fact that family planning  has never and will never be in my control. 

I will be honest and say that I have felt sorry for myself these past few months.  I have felt angry that I have this body that does weird things and is so unpredictable.  I have felt sorry for myself that I have hormone issues and pretty much never feel that good.  It's unclear whether this newest issue is related to my PCOS and endometriosis, but it seems like it all must be connected somehow.

So that was the last big challenge of 2016.  It was a soul-trying year in a lot of ways.  In 2017, I am looking forward to recharging my physical and spiritual health.  I hope the new year brings lots of peace, health, and happiness for me and for those I love.

We got these family pictures taken in Denver when my dad got the extended family photo shoot.  I love seeing my people and realizing that no matter what obstacles we face, we have each other.  Not that things are always butterflies and roses in our home--they aren't.  Motherhood is a challenge for me--it stretches me every single day--and even marriage, which has always been pretty easy for me and Ryan, was difficult this past year with all of the stress of the medical problems and big decisions with his career and such.  But at the end of the day, I love these people fiercely, and they love me.  We are "Team Nielson!" as the kids say.  They are my best friends.

 

I am beyond grateful for the opportunity that I have to live each day with them, and I continually try to accept the mantra that one of my favorite church leaders used to say: "Come what may, and love it."

Life is good, even when it is hard. 

Home for the Holidays: Part 2

We kicked off the holiday break in Pocatello with a visit from Santa Claus a few days before Christmas!  We couldn't believe it when he came walking right into the Nielson home!  Noah was so shocked that he fell off the couch where he was sitting.  Ha!

It was actually Ryan's uncle Kelly who dresses up as Santa and does parties and stuff around the holidays as a little business--isn't he absolutely perfect??  The kids loved it!

On Christmas Eve, we had a feast made my Grandma, and then we acted out the Nativity story as Grandpa read it from the Bible.  The kids were so excited about this.  One of the highlights of the night for me was hearing Noah whisper to Kate, "Isn't this so fun??" as they waited to come in as Mary and Joseph.  I love the memories these cousins are making as they spend time together.

As I was tucking Noah into bed that night, we talked about the possibility that the Polar Express might come for him that night.  He said he was pretty sure it was "just an old railroader's tale," but he asked if he could lay out his snow clothes just in case.  He wanted to make sure he was ready to hop on the train and stay warm if it came for him.  My heart truly exploded on the spot--I cannot get over how much I adore that imaginative, smart, innocent, playful little boy.  I made him promise that if the train came for him, he would come and kiss me goodbye before leaving the house.

The next morning, the kids were so excited to see what Santa had brought for them, and we snapped this photo of them waiting on the stairs before they ran into the living room to discover their loot.  Christmas morning is definitely the most magical day of the whole year.

After presents it was time for breakfast, and these two little Elsa and Anna cousins "helped" Grandma make her famous pumpkin waffles.  Sally got these Frozen nightgowns for Christmas, and she has pretty much refused to take off the Elsa nightgown in the month since.  And anytime Lucy is around, Sally insists that Lucy be Anna. ;)

 

Since Christmas was on a Sunday this year, we were excited that we would get to go to church and worship the Savior that afternoon.  I was looking forward to getting the kids all dressed up in their red church outfits and going to sing carols about Jesus.  Unfortunately, we had a massive storm in Pocatello, dumping over a foot of snow, and church was cancelled!  I was actually quite disappointed, as I really wanted a spiritual focus for the day, and it's so hard to do that with little kids around.  But Ryan gave a little family devotional and we made the most of it.  And we decided to end the day with  a wintery walk, pulling the kids on a sled and walking up and down the streets to look at the lights.  It was magical.

The day after Christmas, we headed up to the family cabin in Sun Valley for a few days.  As always, it was one big party!  Sally was so exhausted from all the fun that she even fell asleep in the sled one afternoon when we were out on a wintery walk! (Or maybe it was from the stomach bug that she had basically the entire week? It didn't slow her down much other than that, amazingly.) 

We went tubing beside the cabin, visited Sun Valley Lodge, spent long days in the cabin with the little ones while the dads skiied Baldy and then took Noah and Kate on Dollar Mountain, played in the hot tub, played Pie Face and laughed our heads off, and made the most of the week.

 

 

 

 

  

We are so blessed to have these people in our lives and grateful to have such a fun place to gather with them each winter!

Home for the Holidays: Part 1

Traveling with our kids to be with family for the holidays is not easy.  It involves long drives, exhausting flights, wild toddlers hitting their heads on the marble floor at the airport and blacking out (yes, this happened to Sally this year!).  

It includes having the kids sleep on our bedroom floor for the week, dealing with the inevitable stomach flu or nasty cold that passes through all of us pretty much every year, and listening to the screaming (or gleeful playing) of a houseful of kids under the age of seven.

It's the constant picking up of toys, making of meals, breaking up of fights...

In the midst of it, I always question if it's worth it.  I am always completely exhausted and overwhelmed.  

But then there are those magic moments with family that I would not trade! And seeing the relationships that my kids are developing with their cousins and grandparents is completely priceless.  That alone makes all of the hassle of worth it!

This year we spent Thanksgiving in Denver with my family.  One day we visited the Denver Aquarium, and when we got home, the kids set up their own aquarium in the basement with stuffed animals.  They set up all sorts of different displays and tanks.  Then they hung hilarious advertisements all over the house and tried to charge people $1 to get in.  So funny and creative and totally something my sisters and I would've done at their age.  

A few of my favorite signs were "Go! Go! Go!  The 5566 acwareeum is the best acwareeum!"" and "100 is the best and the 5566 acwareeum gits 100! yes! yes! yes!" "Awesame acwareeum daoon stares! Only $1!"  These kids are the cutest!

Callum, who is in second grade, has been taking Strings class at school and has started playing the violin.  It is truly terrible to listen to, but Noah thinks it is just amazing. ;) He truly worships everything Callum does.  One night they started their own band, with Luke on the piano, Noah on the recorder, and Cal on the recorder.  Heaven help us all (and get us some earplugs!).

 

In addition to ear-splitting band concerts, there were communal baths in Bapa's big tub.  I wonder when these cousins are going to get too old for this? Boys don't care about modesty, right?  Ha!

We also spent lots of time with Great Granny and Grampy, who have all of our hearts.  The kids helped Granny decorate her tree and spent lots of time reading with Grampy.

We also got some professional family photos taken with them.  Who knows how many years we have left with these two, so we just love to soak up every moment.

 

Probably my favorite part of the week was snuggling my fat turkey butterball of a niece, Alice.  Oh my gosh she is scrumptious. I don't get to see her enough.  She lives in Virginia now, and it's not fair.  Too far away!!!  Waaaaah!

 

So in spite of all the effort it takes to get there and to manage the chaos once we are there, it is totally worth it to go home for the holidays!  I mean, cultivating relationships like this is what life is all about!

Part 2 about Christmas in Pocatello/Sun Valley with Ryan's family tomorrow!

Ahoy, Mateys!

After last year's ambitious Halloween costume, I was done.  I promised myself I would never go all out like that again.  And I meant it.

So this year when Noah said he wanted to be a pirate, I was thrilled.  He'd had a pirate birthday party, so I knew we could reuse his party t-shirt and hat, cut up some sweat pants, and have a zero stress costume.

But then he started talking about how he wanted to turn his bike into a pirate ship, and I was like, "Uh no...Mama is out!!!"

Fortunately he has a father who truly loves to do this sort of thing, so those two boys started scheming...and then they started spending hours together out in the garage.

Ryan convinced him that a bike wasn't going to cut it.  They needed a wagon.  And they needed to expand the wagon with wooden pallets...and cardboard...and wooden masts and sheets and flags and rope.  Ha!

Every night after dinner, Noah would say, "Dad, can we go work on my pirate ship?"  Cutest thing ever.

So although it is ridiculous to spend this much time and effort on a Halloween ensemble, when it is the result of hours of father-and-son bonding time, I think it's pretty awesome.

BEHOLD, ME HEARTIES....

Captain Noah and his First Mate, Hairy-Chested Sal...

 

Never has chest hair been cuter!!

Isn't that pirate ship completely amazing??  A few people told Ryan that if dentistry doesn't work out for him, he could go into building floats for parades instead.  The kids actually rode around in it as we Trick-or-Treated.  Noah had a little too much fun shouting out commands and ordering us to pull the ship this way and that.  Hilarious.

Another highlight of the evening was Katie came to Trick or Treat with our little pirate crew, and she did her own spooky makeup, which Noah, of course, loved.  So fun. 

People ask how we will ever top this.  Truthfully, we won't try.  If it happens naturally like it did this year and Noah and Ryan are excited about some elaborate project for a Halloween in the future, we might do something big--but if it doesn't and the kids end up in rags from the dress up box, that's fine too.  Halloween is about family fun, not stress, right?

All I know is that it was arggguably one of our best yet, and we will never forget it!