Team NeMO: 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 -