Attempting to change my mind set

I’m well aware that stress is a factor. As a NMO patient I’ve had that tough conversation about doing too much and over extending myself more times than ­­­­­I’ve Googled someone. But I’ve never walked away from any of those conversations convinced that my plate is too full. Logically speaking, in my head there have been times that I could have admitted I was possibly over capacity. Yet in my heart I have always believed that the universe wouldn’t throw anything at me that I couldn’t handle. Maybe it’s maturity or maybe being a mother or maybe a phobia of another long term visit to the hospital but after last week I’m finally ready to admit that sure, I might have bitten off more than I can chew and sure, I could re-evaluate how I handle stress. Maybe.

After a whirlwind week of work (where every day is completely different as an entrepreneur), cramming for a midterm exam (I’m also working towards my Marketing degree) and feeling completely inadequate as a mother and a wife (my floors were so dirty), I jammed in time with friends and a routine MRI exam. Crazy, right? Prioritizing my tasks would make things easier but when everything needs my attention yesterday, what takes precedence?
It was a scheduled routine/we need to do a check MRI on Saturday night and since I’m not really the type to become claustrophobic I didn’t put much thought to it. Despite how painful I found the machine (not being able to move for over an hour on a hard metal table, laying on my damaged spine) what I found the most unpleasant was being still long enough to be left with my thoughts.
That’s when I’m forced to answer those nagging questions in my head I try to ignore by staying busy.

Am I a good mother and wife? I could do better.
Did I over extend our family starting this business? Probably. Too late now.
Am I great enough in my industry to be truly successful? Looks like it but who really knows?
Did I pass that exam I just wrote? Gosh, I hope so.
Do I get enough sleep/food/rest to manage my NMO? Absolutely not, but something has to give.
Am I managing my stress appropriately? Not at all. That’s an epic fail.
What am I going to do to change all this? I HAVE NO IDEA! WHAT AM I GOING TO DO???!!

If you ask anyone who knows me well they’d all tell you that I do my best work when I’m on the verge of self-destruction. You see, that’s how I was conditioned as a child. Every day was a battle of survival and when things got tough there were 2 options in life: one either gives in and plays the victim, or you dig real deep and fight harder. I watched those I love so much always play the victim and it killed (ok, it still kills me) to know they have the potential to do so much more. To compensate, I’m never satisfied with what I have. I always feel like I can do better, like I can do more. So, what I should have been thinking was:

I’m so blessed to have a great little girl and to be so loved and supported by my husband.
I’m working really hard to make sure my company is successful.
I did the best I could on that exam.
I will make conscience decisions about what I eat, getting enough sleep, and taking me time.
I will ask for help more often.

I think the secret to staying healthy (as much as NMO will allow) is to change my state of mind. My greatest weakness is my insecurities and my constant desire to take on more. If I can be conscience of those weaknesses I’ll be moving in the right direction. Maybe.

27
Feb 2014
POSTED BY Jenna
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6 Comments

  1. Nicole Henry

    Hi Jenna. I am newly diagnosed with NMO. Like others with NMO I had a back and forth ms diagnosis for the past year and a half. I have followed dr terry wahls diet which is ms diet based on paelo methods. Any suggestions for a good diet for NMO patients? Thank you for what you do. My biggest hurdle in life is not being to hard on myself, I always want to do more and better. This will be something I must come to terms with for mental strength against my NMO.

    Best
    Nicole

    Comment by Nicole Henry on April 7, 2014 at 9:41 am

  2. Jenna

    Hi Nicole. Thanks for your note. I can’t recommend a diet plan that works well for NMO but I do know a lot of patients who find a gluten free diet beneficial in managing their inflammation. It’s tough not being hard on ourselves. I continue therapy to manage my expectations. Take care of yourself!

    Comment by Jenna on April 8, 2014 at 8:33 pm

  3. norma

    Hi Jenna and Nicole;
    I am happy to have found this site. I was diagnosed with NMO 10 months ago and seemed to have had my first relapse. My dr done reommends Cellcept. Have you used this drug? any side effects?

    Comment by norma on April 19, 2014 at 1:30 pm

  4. Jenna

    Hi Norma,

    I’m on Cellcept right now and have been successful on it for several years. I actually could not tolerate Imuran and Rituxan is not offered to NMO patients in Ontario, Canada. I have only struggled with nausea when the dose was too high but once we lowered it I’ve been comfortable on it. Hope that helps! Of course, your doctor will have the best plan in place for you.

    Jenna

    Comment by Jenna on April 21, 2014 at 2:02 pm

  5. debbie

    Hi Jenna. My daughter was recently diagnosed with nmo in Feb of this year. Her eyesight is fine but she has major weakness in her arms and hands. She cannot open and close her fingers in both hands on her own. She also has no feeling of temperature or pain from her chest down. She attends pt and ot weekly to help. She is taking 20 mg daily of prednisone. She recently received a 2nd opinion from an nmo specialist who agrees that this is a form of nmo. She had recommended cellcept. My daughter would now like to get a 3rd opinion before she decides to start taking any particular medication. In the meantime I worry about her having another attack while we wait since all she’s taking is 20 mg of prednisone. She still does not think she has nmo especially since her lab tests have come back negative. Her mri however did show that her upper spinal cord c3 to t3 was affected. Also, since her legs which she could not move when she had the attack reponded within 1 day of having a plasma pheresis infusion her neurologist belives this is another sign that this is nmo. Even though the lab test have cone back negative twice the doctors both recommend she begin cellcept to ere on the safe side rather than taking a chance of having another attack. Do any of you have any insight that you can offer us which would be greatly appreciated.

    A very worried and concerned mom

    Comment by debbie on April 23, 2014 at 12:23 pm

  6. Jenna

    Hi Worried and Concerned Mom,

    First off, thank you for the care and concern you have for your daughter. I hope she greatly appreciates your support. As a patient with NMO I cannot express how important support from family and friends impacts recovery and management of this disease.

    Even though she’s had 2 negative NMO blood tests does not mean she does not have NMO. The test is not 100% true. Many patients have had multiple negative tests and later found the test positive. In the meantime, yes, they did start a NMO treatment plan that they have responded to. I was one of those patients who had a negative test only to have another major attack 4 months later, which guaranteed the diagnosis. We then did the test again and found it positive.

    I’ve been on Cellcept for several years and I typically function well with no side effects. I found it easier to tolerate than Imuran but then everyone is different. If 2 doctors have suggested she has NMO it might be worthwhile to start treatment. It’s difficult to rebound from a major attack – some don’t. A 3rd opinion never hurts but I would suggest seeing a neurologist who has experience with NMO and MS patients. Depending where you are the Guthy-Jackson website has a map called “Map the Doc” that shows neurologist comfortable treating NMO.

    Best of luck and please reach out if you have any further questions.

    Jenna

    Comment by Jenna on April 23, 2014 at 12:51 pm

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