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. 

Magic in the Midst of Anxiety

It has been a week of sweet moments and hard moments.  I have struggled with anxiety since Sally was born (and probably long before that, but it really got bad in those first few weeks postpartum), and I think I am experiencing another "flare" right now--not nearly as bad as the panic attacks and insomnia that plagued me right after she was born, but just overwhelm and worry that makes daily life feel really difficult sometimes.

A friend asked me what anxiety feels like, and I told her that, for me, it's like all the normal stresses of motherhood are magnified to a point that feels beyond overwhelming.  Things that aren't a big deal feel like a huge deal, such as getting the kids meals, cleaning up the kitchen, or calming a fussy toddler.  It's like I can't face it.  I can't do it.  And that makes me feel worried, like, "What if I can't take care of my kids?" It's just this heavy brick of overwhelm that I carry around with me.

Another sign that my anxiety is flaring is that I start to have irrational worries about my health and the health of my children.  Lots of fear, lots of ruminating.  It makes it hard to fall asleep at night, and of course, sleeping would help manage the anxiety, so it's just one big vicious cycle.

Anxiety and depression are such hidden, lonely, inner battles.  It's hard to explain to people, and you often seem totally fine from an outsider's perspective, when inside something just feels off.  It's hard to reach out for help because you don't know if people will understand, you don't know if what you are experiencing is bad enough to "deserve" help, and you don't know if you are just a wimp or if you are dealing with an actual illness.

So that's kind of what it feels like.  And it feels good to be open about all of this and just acknowledge, "Hey, some days have been hard lately."

I am okay.  Like I said, it's nothing like it was before with the panic attacks--but I'm going back on a low-dose antidepressant just to keep this managed.  I stopped taking it a few months ago and felt fine for a while, but I can see the signs that things could get bad again, so after some research, I've decided that I will probably just stay on it.  After I made that decision, I stumbled upon this article randomly, and it felt perfectly timed.  Minus the whole star on Broadway thing, this singer's experience with anxiety seemed so similar to mine.  And I loved her advice about recognizing it as an illness and not a weakness and reaching out for help.

Hopefully in a few weeks things will be back to normal--and "back to normal" does include some hard days and stressful moments!  That is just life, especially with young children.  But "normal" doesn't include debilitating overwhelm that makes it hard to wake up in the morning and irrational worry that makes it hard to sleep at night.

In the midst of all of this, I am searching for the magic moments with my children.  I did this when I was going through IVF, and it helped a lot, so I've been doing it again.  These two kiddos of mine are the greatest source of joy in my life, as well as the greatest source of stress.  Sally is at a super needy age and sometimes it is so hard to keep her entertained and managed all day.  And Noah is my little buddy, but he is still a four-year-old: there is always some misbehavior to worry about or some epic meltdown to calm. But the perfect moments with them are so plentiful.  I have a note in my phone to record them, and it seems like I can't write them down fast enough.  So many perfect moments every day.

So as I sit here on a Sunday night contemplating the week ahead, I want to relive and share some of those magic moments.  Here is a sampling:

I can hear Noah playing in the bathtub while I do the dishes every night, and the sound of him chattering to himself without ceasing makes me feel like all is right in the world.

When he plays, both in the bath tub and with his Legos in his room, he is often re-creating the sinking of the Titanic, which is his new obsession.  He has checked out several library books about it, and he knows all the details about how it all went down (pun intended).  I will hear him saying things like, "Oh we're the Titanic.  We can sail with icebergs, no big deal."  And then "Oh no, we are sinking, and the Californian has already turned off it's radio for the night!"  And then the sad finale: "Well the Carpathia is finally here to save us--too bad we are at the bottom of the sea."

Do you see the Lego iceberg and Titanic? 

The things Noah says!  Could anything be funnier?  The other morning, he and Sally were sitting across from each other at the breakfast table eating yogurt while I was getting dressed, and I heard Noah say, "Sally, I'm bored.  Put your eyes on me, and let's start talking!"  Ha!  By the time Noah was Sally's age, he was saying about 50 words and forming phrases.  Sally, on the other hand, says about six words.  Her brother does enough talking for the both of them!

How about the fact that he named our Elf on the Shelf "Brad"? So random!  And not elf-ish at all!  But it's the best because whenever he finds the elf engaged in some make-believe antics, such as driving a toy car or making a snow-angel in the flour, he says in this dramatic voice, "Oh Braaaaad!" like the elf is just so silly.  Noah even said to me one morning when he spotted Brad roasting marshmallows over a candle, "Mom, I see something ridiculous!"

 

We had a fun afternoon decorating the Christmas tree together while dancing to holiday tunes, and when Noah came around the corner and saw the finished tree, he said, "Oh Mom! It looks fabulous!" ;)

He calls Hershey Kisses "Horeshoe Kisses" and Net Flix "Neck Flix." So now, of course, we all do!

He constantly says "No way, Jose!" lately, and he is fond of telling me that things are "easy peasy lemon squeezy." I think he picked up these sayings from preschool? 

My favorite is dropping him off at school because we shout things at each other as he hops out of the van and runs up the sidewalk. "You're my favorite boy!" "You're my favorite mom!"  "Have the best day ever!" "You have the best day ever!"  "Be a good boy!" "Be a good mom!"  He stops right before he gets to the door, and we blow each other a million kisses.  I love watching his little backpack bob up and down as he hustles into school.

Noah and I play a secret hand-holding game that my little sister and I made up when we were young. We would hold hands and one of us would squeeze three times to signal "I love you."  The other would squeeze back two times to ask "How much?"  And then we would respond by squeezing each other's hands as hard as we could until they were crushed.  I recently taught this game to Noah, and he thinks it's the greatest.  Sometimes I will stick my hand back there while I am driving so we can play spontaneously.

He is still obsessed with trains, and I am starting to wonder if he will ever grow out of it.  Maybe he will be one of those old men who sets up 100 train sets in their basement?  We watched the movie Elf the other night, and Noah loved the entire thing except for the scene where Buddy the Elf and the department store Santa get in a brawl and knock down the toy train set.  He was literally wailing.  He cried pathetically, "Not the toy train! Not the train!"

His favorite movie right now is a free documentary on Amazon Instant Video called "I Love Toy Trains."  The other day, I walked by him as he lay on my bed watching it, and he had his knee up with his other leg crossed over it, his foot just a-tapping as he belted out every word to the "Box Car Boogie."  That definitely made my day.

On Friday, we went on a Mother-Son date to a local toystore, and he used his allowance money to buy a couple of $1 plastic trains.  We sat together on the floor and he spread out his dollars so he could count them one-by-one and figure out how many trains to buy.  He meticulously went through the bins as he chose the perfect purchases.  So cute--an image I will never forget!  And he surprised me when he used some of his money to buy a little train for Sally too.

And speaking of that Little Miss, oh how I love her as well!  I cannot resist this little face:

 

She has suddenly become interested in books, and it fills my English-teacher heart with joy!  She will bring me a book (her favorites are "The Farmer in the Dell," "Where is Spot?" and "Goodnight Gorilla") and then she will grunt insistently until I sit down and read them to her.  She is very particular about where we read, and she will often lead me to the bed or her recliner for our reading time.  I love that she will now sit in our laps for a few minutes to read.

 

The other day, I came around the corner and caught her sitting in our tiny reading chair with a book open on her lap, and it was so unexpected and made me so happy that I gasped.  At that sound, she looked up and grinned at me.  She has an open-mouth, craggy-tooth grin and the cutest dimple--her whole face fills with glee when she smiles.  There is nothing like it.

She has also become willing to sit to watch a show, and I am almost as happy about that as I am about the books. Ha! After ten years without a TV, we got one recently, and it has been heaven to keep our busy Miss Sally occupied with a Baby Einstein every once in a while, especially on days when I am struggling with anxiety.  She still won't sit for long, but hey--even fifteen minutes is amazing for an overwhelmed mama!

 

I love watching her play with her daddy.  They have a nightly game where she stands on the bed and he throws a red kickball to her.  She laughs and laughs, and then she rolls it back to him or lays on it on her belly for a while.  Noah always joins in on the fun, and I love hearing all of them giggling together.  I love our little family and the daily rituals we share.

Lately, Ryan has put his own twist on the old saying, "Last one to ______ is a rotten egg!"  When we are trying to get out the door for an outing, he will say, "Last one to the car is a rotten tooth!"  Very appropriate for a dentist, if you ask me.  Noah came up with his own variation today when he said, "Last one to the car is a rotten diaper!"  You can tell what we think about in our house!

Another little family ritual that we have is "I will punch you in the gut!"  I know that sounds completely bizarre, but my sisters and I have a small issue with "cute aggression" that makes us want  to squeeze and gnaw on things that we find adorable. Anyone else out there have this problem? ;)  At some point when Noah was young, I started saying to him, "Oh you're just so cute, I want to punch you in the gut!!!"  And then I would chase him everywhere and pretend to sock him in the belly and he would laugh maniacally, and thus a game was born.  One time a few years ago we were walking through the grocery store and Noah was sitting in the front of the cart and said out of the blue, "I will punch you in the gut!" and just bopped me one, and I couldn't stop laughing.  It was so great.  I'm sure everyone around us thought we were nuts!  The tradition has continued with Little Sal, and we are often chasing her around to get her in her chubby little belly.  She definitely recognizes the word "gut," and when we say it, she will raise her shirt and point to her stomach, or she will run up to one of us and find our bellies and give us a sock.  It's the best.  I know that probably sounds so random and borderline abusive, but it is the cutest, most bonding little game.  Now let's just hope Noah never does that to a friend at school!

Oh my gosh, it's such a happy life.  Writing that list was good for my soul tonight.  It reminded me that I am doing an okay job as a mom, even when I feel totally overwhelmed and full of worry.  It reminded me that there is joy all around me, even in the midst of hard times, even when I didn't want to face the day that morning.  There is always joy.

I wrote an article for Power of Moms a few months ago called "Anchored by Beautiful Moments" about how noticing perfect moments can sustain us through hard times, and that truth has been proven to me again tonight!  I am grateful.

So here's to a week full of love and laughter, gut-punching and giggling.  Life is good--even when it's hard.  I'm so glad I was reminded of that tonight.

Let's talk about mental illness, shall we?

How’s that for a blog post title?  But seriously, this subject has been on my mind for a while now, and I have some stuff I want to say about it.

I have been on an antidepressant since Baby Sally was born six months ago, and it has helped me a lot.  I have always had what I call a “melancholy” disposition.  I'm not naturally a downer or anything--I actually think I'm naturally optimistic and grateful--but I’m a deep thinker and sometimes life with all of its complexity really troubles me.  I’ve had bouts of deep discouragement over the years, and heaven knows my worrywart nature has sometimes bordered on anxiety.  But I’ve never been on medication before now, and I’ve always been able to manage.

That changed after Sally was born. As my hormones were leveling out, I had crazy physical symptoms, such as chills, uncontrollable shaking, nausea, vomiting, and night sweats.  I had major insomnia, so even when the baby was sleeping, I couldn’t.  I felt afraid to go to bed at night because I knew that I would just lay there and ruminate and my thoughts would go to crazy places, and I would say to myself over and over, “You need to sleep, you need to sleep, you need to sleep…” which would make anxiety take over.

Most troubling was my overwhelming, irrational fear that I wouldn’t be able to take care of my children.  I cried all the way to the hospital when Ryan and I went for an appointment with a lactation consultant.  I didn’t know quite why I was crying, but whenever I looked at the baby, I felt a surge of inadequacy that bordered on panic, and I just couldn’t hold back the tears.  Feeling so out of sorts left me wondering, “Am I ever going to be myself again?  What if I get serious depression and can’t care for my children?  What if my personality changes and I’m never the same?”

The kicker was when I had a full-blown, world-closing-in panic attack one afternoon while I was trying to take a nap.  We are talking heart racing, deep breathing, pacing around the room, sweating bullets, fearing that I was going to die in that moment.  It was one of the scariest things I have ever felt. After the panic attack, I called the doctor and asked to be put on an anti-anxiety medication. 

The doctor put me on a low dose of Zoloft, and it has made a huge difference for me.  I feel like I am the best, truest version of myself now.  I am more patient, happier, and less of an irrational worrier.  I still have hard days on occasion, of course, but it’s not like it was before.  I actually think I probably should have been on medication long before the baby was born, but it took a major event and a major breakdown for me to see what has maybe been clear to the people closest to me for a while.

Will I stay on this antidepressant forever?  I hope not.  I’d prefer not to be on any medication forever.  But if I had a thyroid problem, I would take my thyroid medication without feeling weak or guilty.  So if I have to take an antidepressant forever, it will be hard for me, but I will continually remind myself that it’s okay—that mental illness is just an illness like any other, and there is no shame in that.  And of course, I will continue to try to do all of the other things that help: getting enough sleep, eating healthy, exercising, having outlets and hobbies, and spending time with loved ones.

I have several friends who suffered with depression for months, even years, before talking to their doctors because they felt weak and ashamed and didn’t know if their symptoms were “bad enough” to merit asking for help.  That just breaks my heart, and I'm grateful that I got help quickly, before things got too debilitating.  It helped to think about other women whom I love and respect who have taken medication for anxiety and depression--it made it feel “okay” somehow, and it gave me hope.

I think there's a misconception that anyone who has a mental illness (such a scary term, isn't it, but I'm not sure why--it really is just illness that requires treatment and sometimes medication, like any other) is really crazy or not normal--and no one wants to be labeled that way.

So, if you are struggling emotionally right now, or if sometime in the future you find that you are, maybe it will help you to know that I have been on an antidepressant and it was helpful.  I also wanted to put this out there in case anyone ever needs to talk to someone who has been there or wants advice about whether to seek support from a doctor or a counselor.  You can always talk to me about anything—truly.

I recently read a blog post written by a woman who struggles with anxiety and post-traumatic stress disorder since surviving the earthquake in Haiti five years ago.  Though I have never lived through an earthquake, I related to so much of what she shared about her experience with anxiety, and it also reminded me of my experience with physical trials and illnesses, such as my very hard pregnancy.  (The more that I live, the more that I realize that though the trials of life vary from person to person, so many of the feelings we experience during those trials are similar and unify us, if we allow them to.)

This is a portion of the blog post that really stood out to me:

“I have an irrational and driving need to appear capable and stoic.  Sure, I mock my foibles in the little things from time to time, but in general I go to great lengths to avoid seeming flustered.  I am like a duck who is gliding across the water, appearing graceful and effortless, all the while with two feet just under the surface, desperately paddling in circles to stay afloat…

DON’T LET ON THAT YOU ARE A MESS.  Keep the anxiety under the surface.

I continue in my charade because a) I am in a good bit of denial myself, and b) people don’t like a mess.  Not for any length of time, anyways.  There is a statute of limitation for what is acceptable for grief.  My succession of miscarriages taught me this painful fact. One or two miscarriages? People are there for you. By five or six? People are uncomfortable. People stop calling. And you start to get the sinking feeling that people see you as a lot of work…

It was too exhausting to explain myself to others . . . too tedious to continually remind people that I’m still compromised.

‘How are you?’

When the answer to that question continues to be negative . . . when people seem disappointed and irritated when it remains stagnant. . . it gets easier to lie.  Or to avoid situations where I’m asked. Because the only fear I have greater than seeming like a mess?  Seeming like a burden.”

Oh have I been there.  Wanting to be capable and stoic.  Fearing that people will find out that I’m a mess.  Not wanting to be a burden.  Fearing that I will be seen as “too much work” in a relationship if I really let on to how desperate I’m feeling. 

So I want to end this post by saying this to my friends who struggle with anything in life, physical or mental:

I get it. 

And I believe you.

And you will never be too much work.  Ever.

I am imperfect and hurting too—so let’s just talk about it.

 A few favorite resources on depression/anxiety and mental health:

Religious

"Like A Broken Vessel" by Jeffery R. Holland

"Upon the Top of the Waters," Ensign Oct. 2014

Podcast

"Unhealthy Stress or Habits? Break the Cycle!" 

         ^I recorded this podcast for Power of Moms about what I learned in counseling 

Helping a spouse or loved one who is facing depression

"10 Ways To Show Love To Someone With Depression"