Its been 3 years already

Last Saturday was my 3 year anniversary of my first major attack of Transverse Myelitis. As the anniversary approaches I go through a range of emotions including:

Sadness (wow, its been 3 years),
Anger (I can’t believe this is my life!),
Pride (look how far I’ve come),
Denial (see sadness and anger),
and even Guilt (I’m so sorry to my family).

I wasn’t sure how I’d feel when the day actually arrived. Would I sulk under the covers? Act overly happy to compensate? Pretend it wasn’t a big deal?

In the middle of the night (after putting Sophie down from one of her feedings) I privately acknowledged this day by starting to write this blog post. I could hear my husband snoring beside me, my dog snorting at the end of our bed and my baby cooing in her bassinet and I thought, I’ll be okay. Having Neuromyelitis Optica (NMO) isn’t a perfect life, in fact, it’s one I’d rather not have but it’s mine nonetheless. So on this anniversary I will take ownership of this life, including all the ugly parts. Sure, there is more hard work for me than the average person (with the baby weight and steroid combination I currently hate myself in the mirror daily), but there is also so much I’m extremely grateful for (check out www.happyrambles.com where you can document your daily thanks).

The rest of the day went by like any other average Saturday. We shopped at the local market, I took an afternoon nap, worked out and then an old friend and her new husband came by for dinner and wine. Giving myself permission to make this day a big deal if I wanted to made it quite the opposite – just another day. I’ll have to remember that for next year.

What do you do on your NMO anniversary?

9 Comments

  1. Lisa Martin

    For some bizarre reason that made me smile (and cry)! So amazing you are! My feelings exactly.

    Comment by Lisa Martin on September 26, 2012 at 10:32 pm

  2. Andrea Mitchell

    My one year is quickly approaching and I can relate to all of those feelings. I’m very stressed because my job informed me if I’m not back by Oct 1st anniversary date I will be terminated. I’m not ready for work yet as I’m just starting vocational rehab to figure out what I can do with the little sight I have left. I’m legally blind and can’t drive, unfortunately I am a corporate trainer for a large company which requires a lot of travel. Needless to say anxiety is hitting as I’ve been with them for 16 years. Feeling blue…

    Comment by Andrea Mitchell on September 28, 2012 at 12:38 am

  3. Denise

    Thank you so much for this website. I just passed my 3 month anniversary of being diagnosed. I still go thru the ups and downs wondering WHY WHY WHY, why me….. I have been working hard with my physical therapist and I thank God that I just moved from my wheelchair to my “granny” walker. I guess I may never know why, but at least I know there are others out there that are going through the same ups and downs dealing with this disease. I was so psyched when I learned that Christine who has NMO and WON Masterchef. It gives me hope that one day my live will get back to normal with a few bumps between rituxan treatments!

    Comment by Denise on September 28, 2012 at 6:27 pm

  4. Jenna

    Hi Andrea,

    Thanks for sharing your story. When I had my first attack my employer did terminate me after several months while I was trying to walk again. I can appreciate the added anxiety as it did not help me with recovery. In Canada it is illegal to terminate someone on sick leave. I ended up leaving that company and now work for the best employer I’ve ever had. At the time I was devastated but in hindsight, it was the best thing. Unfortunately, living with NMO requires re-inventing oneself or in my case, discovering who I really wanted to be.

    Comment by Jenna on September 29, 2012 at 1:35 am

  5. Jenna

    Hi Denise,

    Thanks for checking us out. I remember moving from the wheelchair to the granny walker to a cane. The whole process took over 6 months. Many days I miss running (I once trained for runs) but I celebrate my successes like wearing high heels again. Stay strong and don’t forget to be patient with yourself.

    Comment by Jenna on September 29, 2012 at 1:38 am

  6. Andrea Mitchell

    Dear NMO, you robbed me of most of my sight exactly one year ago from today. However, I have grown tremendously in my faith, my husband and I are bonded more then ever, I’ve established a personal loving relationship with my Inlaws, I am in vocational rehab working on a return to work. You have not won as I am now learning how to keep you away. I am stronger then ever and looking forward to a new journey as I figure this out day by day.

    Comment by Andrea Mitchell on October 1, 2012 at 6:16 pm

  7. Jenna

    Thanks for sharing Andrea. That was absolutely beautiful and very inspiring.

    Comment by Jenna on October 4, 2012 at 3:33 pm

  8. Jeanette

    I live in Taiwan. 36y/o. I had transverse myelitis just over a month ago. I am a full time mom of a 5y/o girl and 3y/o boy. It was a terrifying experience. Been crying everyday since I was rushed to ICU Sep5. I had paralysis from chest down. And to be told of different diagnosis and 75% recovery. The fear that I won’t be around my kids much long or as much as I want to. It was difficult to accept that I have this rare and auto-immune. I am reading NMO from internet and emailed some questions to guthy-jackson foundation. Hope an expert in this field could help me verify my test results.

    Comment by Jeanette on October 13, 2012 at 8:25 am

  9. Jenna

    Hi Jeanette,

    Thanks for reading our blog. TM is terrifying but hopefully with the right drug regime like steroids, you have a recovery. Please keep us posted.

    Comment by Jenna on October 13, 2012 at 2:59 pm

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