5 Years Living with NMO

Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.

Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.

It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.

6 Comments

  1. Lelainia Lloyd

    Erin, you are a powerhouse! I watched your work out videos and I am in awe of all you’ve managed to accomplish. I think the only way to live with this disease is to just square your shoulders, take a deep breath and keep moving forward. Yes there are days (many!) when we’re going to be knocked flat by NMO, but what defines us is how we choose to fight to get back on our feet and keep going. We may be affected by what’s happened to us, but we will not be reduced by it. NMO has picked the wrong women to mess with!

    Comment by Lelainia Lloyd on July 29, 2014 at 7:42 pm

  2. Jeanette

    I am happy and encouraged to read your posts.

    Comment by Jeanette on August 16, 2014 at 9:13 am

  3. Anonymous

    I’m going through IVF treatments and I’ve had a bunch of ON flareups. Did you have a flareup while stimming? I’m trying to just ride it out till egg retrieval but it’s frustrating and I don’t want to lose more vision. Have you done PLEX and if so has it helped? The steroids always work, but I seem to be dependent on them now and shortly after I finish a course I have another flareup. My vision is pretty foggy in my left eye. Your blog has really been informative and helpful for me. Thank you.

    Comment by Anonymous on May 2, 2016 at 12:13 pm

  4. Erin

    what do you mean by stimming? Are you on any steroids right now? Alex seems to help some people but not all . Jenna has never done Plex Erin has done PLex 3 times but after she had her son.

    Comment by Erin on May 4, 2016 at 3:23 am

  5. Shirley Douglas

    Thank you so much for contributing to the blog. I’v been living with NMO since 2011. My neurologist advised me not to go on the internet to read anything on it because there was a lot of misinformation out there. It took me all of these years to find this blog. I just recently found a neurologist at Mount Sinai Medical Center who will replace the three times a day Azathioprine to Rituximab. Can someone tell me what to expect after the treatment?

    Comment by Shirley Douglas on June 16, 2016 at 2:08 am

  6. Jenna

    Hi Shirley. I’m not familiar with the medical team at Mount Sinai here in Toronto as I work with a team at St. Michael’s Hospital through the MS Clinic. I don’t take Rituximab as it’s not covered for adults with NMO but those 18 and under (I believe) can get the treatment. Our other bloggers, Erin and Christine, do Rituximab treatment in the US. For every person recovery is very different. Some need to sleep it off for a few days while others feel quite nauseous, unwell and take a bit of time to recover from the treatment. Some also have different experiences from one treatment to the next. Best of luck and do keep us posted.

    Jenna

    Comment by Jenna on June 20, 2016 at 2:30 pm

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