Life Interrupted (in a good way and also how it could end)

I’m currently 32 1/2 weeks pregnant and this has been a wild ride.  It has been the steepest learning curve of my life, one that I am trying not to be overwhelmed by and just enjoy.  When I was first diagnosed with Neuromyelitis Optica (NMO) I thought for sure that being pregnant was something I’d never get to do.  In truth, my family also thought the same thing and they rightfully took it rather hard.  For all the times that they showed how upset they were by this truth, I digested the painful realization and tried to be tough about it.  Being a Mom is something I thought I’d like to do “one day” but when the option was taken away it became something I had to do. 

It has been a long road with lots of doctors and guesses and medical procedures.  Since I’m in the home stretch things have started to become more difficult but it was expected so I’m trying to just manage it in strides.  I’m currently on 300 mg x2 of gabapentin, 20 mg of steroids, omeprozale (to manage all the acid reflux from the drugs), prenatal vitamins and a DHA/EPA vitamin. 

The steroids always have interesting side effects.  With a pregnancy, I was diagnosed with Gestational Diabetes (GDM) early on – steroids elleviate sugar levels.  At first I was able to manage it with diet control but as my hormones increased I eventually had to go on insulin before every meal.  Just last week I really started to struggle to move around, including walking.  Turns out I also have Symphysis Pubis Dysfunction (SPD), which in short means the ligaments in my pelvis stretched too much too quick.  If there was a competition for how many acronyms one could get through a pregnancy I would be a serious contender. 

Of course, throughout all this, life doesn’t stop, or rather in the case of my Opa – it does.  My Opa passed away just a couple of weeks ago at the age of 90.  He was the patriarch of my family and provided a silent strength that kept us all together.  I wish nothing more than that he’d have been around to meet my baby but I take comfort in knowing he lived a full life.  2 weeks before his passing my family threw him a giant reunion.  I think in a lot of ways it was a goodbye party.  My Opa felt he had a chance to see his entire family one last time so I’m glad we were able to get together.  With his passing I’m reminded of so many life lessons – lessons I’ll teach my kids and ones I should follow myself.  My brother made a great short video of our reunion, which is how I’d like to remember my Opa – happy, well fed and surrounded by those who love him.


  1. Ellie Perese

    Hi, my name is Ellie, and I was diagnosed with NMO 04/01/15. It has been such a tough road since find out what the disease is all about. I’m 22 years old and I had my life sorted out after University, but it all got put on hold when I was diagnosed.

    It was so hard to hear everything that I had to go through and what was expected.
    Firstly I had lost sensation on my left side of my body, I couldn’t feel a thing. I then had a second relapse where my vision was blurry and my right eye wasn’t functioning properly. I then had a third relapse where I could barely walk. I was taking high doses of Prednisone and also Mythlprednisone. I am now currently on Microphenelate Motifiel for a long term.

    My concerns were that I may not be able to have kids in the future, and I have always dreamed of having a big family. I’m just scared that I may never be able to conceive. To be honest me and my partner have tried, but still have not been in luck. He always assures me and tells me that everything will be ok, and to always keep our faith strong. As we do its just a matter of being patient.

    Have you had many complications whilst pregnant? Were you scared at all? Is baby healthy? Does having NMO put any sort affects on baby at all?

    I have so many questions and I love reading these stories. Because I come from New Zealand, there isn’t many people who have heard of this disease or any groups that I can speak with. So it’s interesting when I come across these stories.

    I hope you can assure me with pregnancy, because I do one day want to have a child.

    Comment by Ellie Perese on January 1, 2016 at 2:15 am

  2. Hi Ellie,

    Thanks for reading! Both Erin and I have had successful pregnancies but the road does have it’s challenges. We’ve previously answered popular questions in this post:

    To answer a few of your other questions that aren’t covered in the above post:
    Were we scared? Yes, absolutely. There’s always a worry of a flare during pregnancy (or any other time for that matter) but it’s something to evaluate beforehand with your team of doctors.
    Is baby healthy? Yes, all 3 of our kids are thriving! Erin’s kids are 4 years and almost a year old. My daughter is 3.5 years.

    If there are any questions not answered in our post feel free to send us another note.


    Comment by schedule cloud on January 12, 2016 at 4:44 pm

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