6 years (or 2190 days, 312 weeks or 72 months if you’re counting)

Today it will be 6 years (or 2190 days, 312 weeks or 72 months if you’re counting) since Neuromyelitis Optica (NMO) tried to take over my life.

I hate this anniversary.

Every year as the anniversary arrives I try to stay positive and envision myself as some sort of super human. I have a lot to be grateful for (or brag about) – I’m a mom to the most energetic 3 year old, I co-own and run a successful company, I’m a wife to a talented journalist, I have best friends and I still do┬átry crazy shit like run a 10km, snowboard and drink my weight in Chardonnay. Most nights I can’t turn my brain off so I lie in bed, completely exhausted, my body always on fire, my limbs feeling like they’re filled with lead, finally acknowledging that every fibre of my being hurts and I mentally high five myself. Ya. I destroyed today. This fucking disease has nothing on me. And then it’s morning and that egotistical voice in my head sounds panicked. What if today’s the day your feet can’t feel the ground again? What if today’s the last day you ever get to see?

This anniversary always feels like one big morning panic attack.

No matter how much I accomplish the rest of the year, I always feel so defeated on anniversary day. You see, NMO can sneak up on any day, even on one of my ‘better’ days. That is what it is to live with an incurable disease.

I wish I was a big enough person to be gracious today; to be proud that I’m surviving NMO one more year or to simply ignore the day. But you see folks, I am merely just a regular human with a learned ability to know how to fake it. Today makes me angry, makes me sad, makes me resentful. Today I’m more like Gollum, where my version wants to binge eat cheesies, eat several Twix candy bars and spend quality time with Netflix. Don’t look at me!

gollum

If you’re feeling this is dark, don’t worry. Like during my mornings, the internal self pity and doubt does eventually end. Something always jars me back to reality – an alarm clock, a preschooler, sometimes even my own motivation. On anniversary day I do the same and wait for the inevitable life challenge to win over my self deprecation. NMO hasn’t taken over my life; It is my life and that’s a truth I’m always denying. Between the doctor appointments, the daily drugs and the consistent pain, there’s also all the good in my life. But if it’s all the same to you, today I’m gonna take my day and cover my knuckles in cheesie dust.

16 Comments

  1. I’m glad you are choosing to celebrate your real emotions along sind the positive ones! I say eat the whole barrel of cheese balls. Heck I may join you! It’s been 26 days since I’ve been diagnosed. 11 months since I had my first event. Yesterday I returned to work for the first time and survived my short 4 hour shift. I’m still trying to learn how to do this, how and when to take my meds, How to slug down all this prednisone (Thanks Crack Milk aka Fairlife chocolate milk) How to deal with GERD now the PPI’s are out of the picture. How to deal with my body not being thrilled with CellCept. How not to let the prednisone crazies make my poor supportive husband suffer too much. I haven’t begun to deal with the long term “what if’s?” Thanks for sharing you real self. Oh and on top of the cheese balls have some cake!

    Comment by Ginger Pahos on September 22, 2015 at 2:07 pm

  2. Jenna

    Hi Ginger,

    Thank you so much for your response. I enjoyed the cheese puffs and also made a cheesecake/carrot cake combo. It was amazing and certainly made me feel somewhat better.

    Jenna

    Comment by Jenna on October 13, 2015 at 3:45 pm

  3. David Czeiszperger

    I am quickly approaching my 2 year anniversary…that first year and a half was hell! My neurologist never has definite solutions or advise, just that I will learn what “normal” feels like and have to adjust my life accordingly as my life falls apart.

    To approach “my story” with more openness and vulnerability, this disease actually helped to awaken me. In the first year of the disease I learned to appreciate being able to walk (that morning I woke up and couldn’t move my legs is still very vivid). I learned to appreciate friendships, especially those that have stood beside me regardless of my condition. I learned that some people suck (a few months after my diagnosis my wife told me she wanted a divorce and then I uncovered months of an affair that stretched back to even before my diagnosis). I learned that I have to appreciate every moment with my children. I learned that sometimes no matter how hard you fight, you still lose.

    Some of my favorite moments of this disease come from giving my children a life they deserve and help them to see the whole world. My oldest broke his arm last spring, but we went sledding with it in a cast…because it could be the last time I ever have the ability to sled with them. I took some heat from his doctor, but once they saw the endless list of my CT, MRi, PEt, etc, they forgave me. I took my kids to Florida this summer…in August…we ran a week of non-stop adventure as we swam in the Gulf, had a pool/bbq day, went to Disney, swam in the Atlantic, another pool day with a block party to send us off the next morning. My children drive me to chase the adventure of each day and not fret the dumb stuff of life.

    This cursed disease has been a blessing in many ways. It has helped me to appreciate the little things in life, to know that each moment is a gift, to love my children just a little more, to forgive quicker…tomorrow I could wake up and not walk, or see, or maybe not even wake up. But today…today I fight and expend every bit of energy my body will allow. Today I tell NMO to go f#ck itself…today is MINE!

    Comment by David Czeiszperger on September 22, 2015 at 2:35 pm

  4. Jenna

    Hi David,

    Your kids are really lucky to have such an inspirational person as their Dad. And Disney was a lot of fun I bet!

    Thanks for reading.
    Jenna

    Comment by Jenna on October 13, 2015 at 3:46 pm

  5. Sue S.

    I totally understand–my husband has NMO–took docs 9 years to figure out what was going on–totally blind in his left eye, very small field of vision in his right eye. The not knowing if and when another attack will come is horrible–gives me severe anxiety. He handles it better than I do, even though he is the one who has it. Hoping for a cure in our life time but I’m afraid that won’t happen. Hang in there.

    Comment by Sue S. on September 22, 2015 at 5:53 pm

  6. Jenna

    Hi Sue,

    I sometimes think this disease is harder for those who love us because it makes them feel more helpless than some of with the disease feel. He’s so blessed to have you by his side. Thanks for being there.

    Jenna

    Comment by Jenna on October 13, 2015 at 3:48 pm

  7. You speak for all of us! On the days that I can’t fake it , I feel guilty . What a dumb ass. Good thoughts and blessings to you and your family for all the best health ! Keep on keeping on ! ( obviously I’m old with that saying)

    Comment by Roxanne on September 22, 2015 at 7:04 pm

  8. Jenna

    Hi Roxanne,

    I love that phrase and age is just a number.

    I’m curious what you do when you feel guilty? Do you tell someone? I’m really bad at bottling it up.

    Jenna

    Comment by Jenna on October 13, 2015 at 3:49 pm

  9. Marie

    I completely understand Jenna. I just had my 1 year anniversary September 26. I look up to you and the others who live, cried, conquered and felt the reality of NMO in everyday life. I’m a single 43 yr old mother with 2 teenage girls 13 & 17. Some days I think I’m going to tear my hair out but most days I think I kick a$$! My 83 yr old mother lives with me so between, work, family, remembering to take pills and dr appointments….like I said you earned that cheesy dust on your fingers.

    Comment by Marie on October 2, 2015 at 11:32 pm

  10. Jenna

    Hi Marie,

    Wow – you’re my hero for just having 2 kids as a single mom but raising teenage daughters? I’m the one who looks up to you! Those are tough ages too.

    On tough days, what do you do to stay healthy?

    Jenna

    Comment by Jenna on October 13, 2015 at 3:51 pm

  11. This post pretty much wraps up how I feel. I was diagnosed with NMO just a couple months ago, with a nasty bout of transverse myelitis in June. I’m adjusting to my new “normal” and learning more and more, how to eat well, things that can help boost my immune system, things like that. I’ll be visiting this blog and joining in on your journeys.

    Comment by Corinne Kerston on October 12, 2015 at 8:18 pm

  12. Jenna

    Hi Corinne,

    Sorry to hear you’re in our ranks. Have you checked out the support groups on Facebook? They are closed pages but such warmth and welcome from other patients. They’ll also be able to help you navigate with any questions as I know you probably have a lot of unanswered ones.

    Stay strong!
    Jenna

    Comment by Jenna on October 13, 2015 at 3:52 pm

  13. I haven’t. Are there any specific groups that you ladies recommend? I’m interested to know what kind of medication others are on. My original neurologist, and the consulting neuro, both haven’t put me on anything.

    Comment by Corinne Kerston on October 15, 2015 at 2:15 am

  14. Jenna

    My Devic’s Family
    Devic’s Disease

    and don’t forget to join our Facebook page as well.

    Comment by Jenna on October 15, 2015 at 1:57 pm

  15. Kat

    Thank you for this entry. I am newly diagnosed and this entry touched me.

    Comment by Kat on February 29, 2016 at 4:36 am

  16. Jenna

    Hi Kat,

    Thank you for reading. What was it specifically in this entry that touched you? Being newly diagnosed I imagine you’re going through quite a lot of emotions. Perhaps we can help?

    Jenna

    Comment by Jenna on February 29, 2016 at 7:34 pm

Leave A Comment!