What is NMO and What Does it Mean to Me??

I first want to start off by saying, despite the title of this lovely blog, and the recent posts about NMO, I really hate talking about this stuff.  Despise, hate, loath, you can choose any adjective you'd like.  It's a huge part of our lives, but as long as I am feeling well, I really don't like to think about it.  It's not that I choose to be ignorant about the disease (I am a firm believer in 'Knowledge is Power') I just choose to not let it affect me.  I am still in control of my life, and how I choose to live everyday.  

That all being said, since it is a rare disease, I figured I should give a little background to those of you who are unfamiliar with it.  Most of this information is coming from various medical websites, and my own personal experiences.  I am by no means a doctor, nor is this disease the same for everyone.  

Guthy-Jackson is the foundation set up by Victoria Jackson, and her husband, Bill Guthy when their daughter was diagnosed with NMO in 2008.  It is a Charitable Foundation dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica (NMO).

Until recently, NMO was thought to be a type of Multiple Sclerosis.  However, recent discoveries indicate that NMO and MS are distinct diseases.  Traditionally, spinal cord lesions seen in NMO are longer than MS, but this is not always the case.  And brain lesions are often found in different areas of the brain.  NMO also attacks the optic nerves more frequently than with MS as well.  With so many symptoms in common, NMO can sometimes be confused with MS or other diseases.  But these diseases are treated in different ways and early detection and treatment help ensure best outcomes.  

The Guthy-Jackson website provides a pretty detailed list of common FAQs if you're interested in reading more about it.  The NINDS also gives a pretty good definition of what NMO is. 

In our house, we call it the "crazy brain disease".  It's easier to swallow.  Zach is too young, but Braden understands that sometimes mommy just gets really sick and we can't always do the fun things we want to, but lately those days have been few and far between.

I have had a few attacks since first being diagnosed.  The major side effects are really not so "major" yet.  I have nerve damage in the lower half of my body, but it's all starting to feel like a 'new normal' to me.  I am used to the random stabbing sensation when my pants rub my legs the wrong way, or the sometimes burning feeling I get in my legs when I am playing with the boys.  I have had a few attacks in both my eyes as well, but the only thing that is really wrong so far is a little bit of peripheral vision loss, but not enough to effect day to day stuff (honestly, I don't even notice it unless I am "testing" it), and colors are not as vivid and bright as they once were, but no colors have gone "dark" yet.

We live a pretty active lifestyle, and try to be really healthy.  Are we freaks about working out and how we eat?  Not at all, but these days we are careful about what we do with our bodies and what types of foods we are putting into them.  Our lives don't revolve around food or exercise, but we do make a point to make those things fit into our lives.  I cheat.  There are weeks I don't work out.  I also really enjoy french fries, hamburgers and rice....we just make better choices and try not to "cheat" very often. 

This is how I choose to look at "why" I have this disease.  There is so much research out there on food and modern farming and how horrible it is.  Do I read it?  Yes.  Do I learn from it?  Yes.  But I can't blame myself for what I feed my body with in the past (I would literally go insane, padded room, insane).  So here is how WE choose to think about my "why me" (everyone who is 'sick' is going to have their own way of thinking):  Everyone has something wrong with them.  Maybe they will have a stroke when they are older, maybe they have vision loss and need glasses, are born with a hernia, or will get cancer, etc.  Everyone has something wrong with them.  When you take a tiny little egg cell, and a tiny little sperm cell and say "make a baby", something is going to go wrong.  I got an extra immunoglobulin (lucky me).  Are there things we can do to HELP these things not happen?  Yes, but call it fate or divine intervention, or belief in whatever higher power you choose to believe in, something will go wrong with everyone despite our best efforts.  Make the best choices everyday and you can help your chances, but there is a plan for us all, and a reason things happen to each and every one of us.

So there is it.  My two cents about my disease.  So now, lets go back to living a fun, happy, "normal" life!!!!

Here are a few photos from last night - 

Zach and I out at Sushi

Braden and Daddy "crushing" sushi

Ice cream on the couch - we are awesome parents

Someone got a little messy

Welcome to Team NeMO!

Hi Y'all! I'm Paige :)  Welcome to my little space on the World Wide Web where I get to share about my life and everything that comes with it.  The incredibly adorable things the boys do, the incredibly naughty things the boys do, living with NMO and trying to not let it affect my day to day life, and how sometimes, despite my best efforts, how NMO kicks my butt.  My desperate desire to go on a vacation with my husband, recipes I try and the family likes, things I like to do, projects I attempt (the successes and failures), homeschooling the boys.... just life in general.  If I have time to write about it, you get the pleasure of reading about it.

Myself, Zachary, Paul, and Braden - Manhattan Beach, CA. July 2012.

A little about "us" I am a sorta wife.  I mean it's not that we don't want to get married, we just have not got around to it.  Paul and I have a backwards life, has it worked out for us - YES! In every aspect he is my other half, but would I recommend how we did things to anyone else, NEVER in a million years!  So for all intents and purposes, I am a wife, and Paul is my husband.  I am a stay at home mom to our 2 boys, I cook, I clean, I do it all - I am a WIFE! - And now that we are all clear on that, moving along...

Quick story while we are on the topic: Paul and I met in college.  He was a super super senior (24 years old) and I was a 17 year old freshman.  I got pregnant with Braden at 18, had him when I was 19 - and it was a horribly emotional pregnancy.  I moved back home (to Colorado) to be closer to my family.  Paul stayed in San Diego, where he is from and where he had been working since graduating.  Long story short - After Braden was born, he moved out to Colorado to be with us, and we lived with my parents for about a year.  Deciding if "us" was something we wanted.  I was finishing up with school.  We were learning to be parents. And so much more during that time.  Let's just say it was a crazy year!  Anyways, fast forward 4 years and we are here today, still standing, but through our fair share of ups and downs.

Braden, was born in August 2008.  After living with my parents (and younger twin sisters who were still in high school might I add), we bought a little 3 bedroom condo down the street, and a few months after moving, we found out we were pregnant with #2.  Zachary was born in September 2010 (he was actually planned!).  We wanted to give Braden a sibling, and since Paul and I were in a good place, we wanted to start growing our family.  I graduated from college with a BS in Business Marketing a month before Zachary was born (go mom!).  Both of these little guys are the greatest things that have happened to Paul and I, both individually, and as a couple.

Braden Richard - August 7, 2008

Zachary Charles - September 22, 2010

Then the madness of our lives began.  I will try to keep this short and sweet and not ramble on too much....

A few months after Zachy was born, I started getting sick, really sick.  What started out as headaches and being tired all the time, slowly turned into muscle aches and paralysis in the lower half of my body.  The first few signs and symptoms I thought nothing of, I was a mom of a 2 year old and 2 month old - of course I am tired, of course I have headaches, of course my eyes hurt.  I eventually ended up in the ICU for about a week on a heavy, heavy does of steroids, and then moved to a recovery center where I had to learn to walk again.  What was originally diagnosed as MS, turned into a diagnosis of neuromyelitis optica (NMO) a few months later (we are now in March of 2011 for those of you keeping a timeline).  All I can say is we have the best family and the greatest support system there is.  It takes a village to take care of a sick mama and 2 little boys. 

So at that point in life: I was a new mom of 2 boys, have an incredibly rare disease, and, oh yeah, my parents were getting ready to move to Texas in July!

Now, I am walking, running, only have minimal sight loss, and am other wise really healthy.  I stay at home with the boys while the hubby goes to work for us.  We attempt homeschooling, and really like to go out to lunch with friends ;)  Every day is a learning experience for each of us.

A few months ago, I started this blog to keep my family and friends in touch with the happenings in our lives.  If I made phone calls to everyone about the cute little things the boys do everyday I would not have time to sleep! I have tried to do this a few times before and really have never been extremely successful {I would define success in this case as staying active in writing things} I would post photos every couple months or so, and would always forget to remind people to go check out the latest updates.

So now I am making this blog a little more, and the adventure begins....

Weekend Trip to K-Town

I don't want to go into our whole life stories...I mean if you are reading this I hope you are not some random person out there, but who knows!  But anyways, a little background for my NMO friends (since after all this blog is all about my life and how the disease affects things for us, and how we overcome those struggles and live our lives to the fullest!) I know, it's emotional blah blah blah, moving on!  Paul and I met at school in Kearney, NE almost 6 years ago (HOLY COW!) Now one of my little sisters goes to school up there, and my best friends parents live close to there as well...so family trip!

It was pretty relaxing, NOT! It started off with Paul supposed to be taking a half day at work, but apparently being an accountant means you can't take time off at the beginning of the month, end of the month, or anytime during quarters close.  So he ends up getting home 3 hours later than planned - so on the road we went.

I think in college the drive took me about 4.5 hours, but with the boys it takes about 5.5 hours.  B went to sleep before we were even out of the city (we hit rush hour traffic leaving).  Z hates his car seat, and I think has only fallen asleep in it 2 or 3 times (EVER!).  He was good though, read a few books, chatted to buddy, etc.  B woke up about 3 hours in, we stopped at Taco Bell drive through and were on our way.  We got to Kearney around 11pm - yuck!  Braden slept downstairs and was not falling asleep right away.  He kept asking Jimmy why he cut the Moose's ears off (they have a few antlers hanging on the walls).

Driving up to NE...very eventful

Saturday we woke up to a yummy breakfast and then went to the Lopers football game.  Before hand we walked around the campus and went into the bookstore.  We ended up buying the boys a t-shirt and hat for about $20.  They had a sign up about getting 4 free tickets to the game, so of course I asked, and we ended up getting our tickets to the game for free (STEAL!) I am so glad we stopped in and spent the $20 on stuff for the boys instead of tickets.  The Lopers ended up winning their first ever MIAA conference game 34-20 (making their record 1-7...hopefully the baseball team has a much better season!!).

Brothers at the football game

With Aunt Bryce at the football game

Family silly face

We tried to get a good family photo, but Zach still wanted to be silly

After the game we went to Come & Get It (Only my most favorite BBQ place in the whole country) for lunch.  DELICIOUS! I should have taken a picture of my loaded pork bake potato for y'all to see how amazing it looked.

Then it was back down to Melissa's parents for the evening.  Jimmy and Oly (Melissa's brother and dad) were shingling the roof while we all sat outside, drinking some beers, listening to the Huskers Game - When in Rome do as the Romans do.  Braden was very interested in what they were doing, and wanted to help.  He also was very concerned for Jimmy and Oly's safety:

"Uncle Jimmy, what's your brother doing on the roof" - Referring to Oly
"Uncle Jimmy, are you sure you should be up there.  You better get down before your mom spanks your butt"
"Be careful! Don't fall!"

Helping rake up leaves

Learning to cut Shingles

Pretending to help shingle

I guess since this blog is about our lives, and NMO is a big part of that, I should mention the parts where it just gets in the way and I want to scream!  One of my biggest symptoms/side effects from my attack in November of 2010, is that my legs/feeling in my legs are SUPER sensitive.  Like anything, there are good days and bad days.  On the good days there is not much difference, but on the bad days I can feel everything, and nothing feels "normal", or the way it should (ie a shower can feel like knives stabbing me).  Well Saturday started off as a not so good day, and quickly turned into a horrible day for my legs.  While we were sitting outside enjoying the weather and company, there were little gnats and boxelder bugs flying all over.  To a normal person they are just annoying, for me, every time one landed on my legs it felt like I was being stabbed with a sharp needle! Horrible! I looked like a freak freaking out every time one touched me, swatting them, waving about...I looked like an idiot. 

The next day we took the morning pretty easy.  Ate breakfast, said our goodbyes and headed up to Kearney for a last visit with a few friends.  We were able to make an last minute stop to the park out of town to see Coach Day's Wife and kiddos.  The boys got to run around a bit before sitting in the car for almost 6 hours.  We grabbed lunch and then we hit the road.

Car ride was fairly uneventful.  B didn't fall asleep until the end of the drive.  But the beginning was not too bad.  We talked and told stories, he asked a lot of questions, sang and danced, played games on my phone, you know the drill.  Z was pretty quite at the beginning, but for the last almost 2 hours was on and off crying.  I think at one point I told him it was okay and he yelled back at me something that sounded like "no it's not okay".  Side note: for those of you who do not know, Zachy is really not talking yet.  He has a few words here and there, but is working in therapy for 2 hours a week to help with his speech. 

Sweeping on the way home

Despite the late start to our trip and the boys being so over tired and over stimulated the whole weekend (equating to fussing, yelling, and children who cannot be reasoned with), the trip was great and it was nice to see Melissa (since she moved away from us a few months ago), her family, and Aunt Bryce...but...it's always good to be home :)

Home Sweet Home!