Working out with NMO

Since March I have been working out with a personal trainer three times a week while I was doing the diet program with Elizabeth Yarnell. Lindsay is a personal trainer at my gym we would do 1 -2 days upstairs in the gym area then the rest of the days in the pool. When I first started working out with Lindsay I told her about NMO and what my restrictions were. I decided to record my workouts for two reasons, One was showing people what I did during a workout routine and the other reason was to inspire other people they can do this as well. Each workout session is an hour long with Lindsay right there telling me what to do and push harder. When I am at the gym I alternate between legs, arms and core each day. While swimming works out really the whole body and is low impact, I would swim 42-52 laps during a session. I broke up the videos into two parts the first video is pictures of me at my heaviest and me working out at the gym and the last video is my swimming routine and the pictures of me with losing over 66 pounds. I hope you all enjoy and it will inspire you to workout as well!

 

 

 

 

 

The Not-To-Do List

In my last entry, I discussed how it’s okay to say no sometimes to things because, let’s face it, there’s only one of you and oftentimes a dozen people asking for a hundred things from you. I shared how this has especially been a personal struggle for me for the past couple of years. Sometimes, not often, but sometimes, I will have a breakdown where I feel overwhelmed and disappointed with myself for not accomplishing everything on my to-do list or for saying no to a favor and thereby disappointing a friend, a colleague, even a stranger.

My husband, John, hates seeing me upset. He’s constantly sending me articles or podcasts about efficiency, priorities, and time management (which I subsequently add to my to-listen/read list). I think I’m detail-oriented and meticulous. He thinks I’m anal. I think he’s careless and lazy. He thinks he’s efficient. I guess we complement each other.

John recently sent me this short podcast by Tim Ferriss, author of The 4-Hour Workweek. I’m notorious for making elaborate to-do lists. One time, a friend teased me because she saw I had “watch the Oscars” on my calendar.

“Your TV has to make an appointment with you?” she laughed.

“Yes,” I said. “Get in line. Your making fun of me is not on the agenda.”

I know I can go overboard with the to-do list. And there are so many times when I look at my list and want to crawl into my closet and hide. But this podcast from Ferriss entitled, ”The 9 Habits to Stop Now: The Not-To-Do List,” is helpful. Even better, it’s short, so I could quickly get back to my to-do—er, not-to-do—list. I listened to it over my lunch break. Now I might have to read the book.

Have you read The 4-Hour Workweek? What are your thoughts? Have you applied any of Ferriss’ advice to your own life? Has it been helpful?

Living As a person with Neuromyelitis Optica/NMO, my health and staving off attacks should be first priorities. That means I need to prioritize lower stress levels, which means decreasing any feelings of overwhelm, which means making a not-to-do list. It’s definitely going to be a challenge for me, but hey, I’ve conquered crazier things.

Elizabeth Yarnell

Here is my video about my diet and experience with Elizabeth Yarnell. I hope you all will enjoy and you can find a link to her website below. The video is broken into two different clips since its 20 mins long. Living with NMO and changing my diet with the help from Elizabeth has really changed my world for the better!

http://elizabethyarnell.com/

19
May 2014
POSTED BY Erin
DISCUSSION 4 Comments

MOMpreneur

Hi everyone.

I was featured in a blog post for Canadian entrepreneurs who are also moms, affectionately called Mompreneurs. I think it’s a funny term ’cause I don’t think as either being a job, let alone a blended job. I’m passionate about both my family and my company. Nonetheless, folks out there think it’s kinda cool how I balance my life so they did a write up here:

http://www.fslocal.com/blog/mompreneur-jennifer-van-amerom-culture-company-inc/

Sidenote: I trade professionally under my maiden name still so don’t get confused. And of course, I had to do a shout out to the world and drop neuromyelitis optica ’cause every chance we get to educate more about the disease the better for us all.

Taking Charge of My Health

 

When I remember how I felt this time last year I can say that I have come a long way. I have gotten off a lot of medication, which has helped me lose over 45 pounds. Last October I came to the hard realization I was over medicating myself and on the wrong medication. After consulting with my doctors we decided to take me off Lyrica and try Gabapentin instead. A month later I lost 20 lbs! This motivated me to lose   more weight so I evaluated my diet and acknowledged that I wasn’t getting enough exercise.

 

Over the last 2 years at the Guthy-Jackson Patient Day for neuromyelitis optica I listened to Elizabeth Yarnell’s talk on nutrition and if certain foods were contributing to our poor health. I finally decided to call her and see what she had to offer since losing weight was important for me and for my family. The first step was a parasite cleanse that lasted 20 days. It was very simple and easy to do. Next, Elizabeth had me draw blood to determine what foods made me more inflamed. Then we tested my urine for 24 hours to see how I digested food. After a week waiting for the results Elizabeth called me for a 2 hour phone conversation explaining my results and a plan.

I couldn’t believe what I learned! I was eating so many wrong foods that were making me more inflamed. For 2 weeks I was on a strict diet and could hardly eat anything. That was tough. But after that we started introducing certain foods again. I’m 4 months into the program and I’ve lost another 25 lbs. Elizabeth has totally opened my eyes about what I should be eating. All of my family and friends keep telling me that they can’t believe how healthy I look. They say I am glowing, they can’t believe how much weight I have lost and that I don’t have that bloated look anymore.

 

I am also working a personal trainer at the gym 2-3 times a week and I do Pilates twice a week. I am 23 lbs away from my goal weight, which was where I was before I was pregnant with Allen. My goal is to lose the last 23 pounds by June 25. My ultimate goal is get back down to my college weight in the next year or so. Between Elizabeth and my personal trainer I think I can do this.

 

Meltdowns are necessary

I love my friends dearly. In a lot of ways they are my family that I get to choose in this lifetime. The friends I’m closest with don’t judge me, they are my cheerleaders and are always there to listen to me. My friends are also very respectful that I’m busy so they’re constantly apologizing when they need to rely on me. That disappoints me because I always hope my relationships to be a two-way street.
Friends are there to help each other through meltdowns. I’m talking about those meltdowns where a good friend asks you how things are going and you start to tell them what’s been going on in your life and suddenly you’re rambling and the stuff that’s just been in your head comes tumbling out and next thing you know you’re in tears and feeling like a complete disaster. Phew! Yes, those kind of meltdowns.
To answer your question, no, I did not have a major meltdown recently but in a way my body was telling me that I was close to a crisis point. I started suffering from vertigo and it didn’t go away for several days. When I finally went for medical help it was determined that it wasn’t a NMO related symptom but rather a sign of serious dehydration and exhaustion. (I’m still suffering from the vertigo but it’s slowly improving.)
Although I don’t enjoy seeing my friends go through difficult times, truthfully it does make me feel less alone knowing that others have meltdowns, exhaustion and stressed out lives. A few excerpts of the lives of my friends:
· One friend is at a crisis point because she’s unhappy with her job and constantly feels discouraged that she’s not landing roles that she’s clearly overqualified for
· Another friend has been taking care of her ailing and elderly father, putting strain on her marriage and her now non-existent career
· Yet another is madly in love with what I think is her soul mate (if such a thing exists) but he lives in another town and neither wants to relocate to be together
· And a good friend is struggling with the decision to grow her family (she’s always wanted to raise a big family) but her compromising health makes this difficult

In my mind I’d deal with each of these situations differently because it’s easier to have an opinion from the outside but that’s not what my friends are asking for. As I’m sure they would deal with my life problems differently too what we’re asking of each other is a shoulder to cry on, someone to listen and just support. I always think to those dark first days of NMO when I was scared, unable to walk and completely confused in a hospital bed – how so many of my friends were just there over the phone, in person pushing my wheelchair and still slinging mud at me like before. Without my friends, without our meltdowns, this would be such a lonely world. So the next time you feel you’re over reacting or things just start spilling out, just embrace it and know your friends love you as much as you do.

I Quit My Job

I quit my job. It feels great to say those words so I’m going to give you a moment to marinate on that.

When I first got sick with Neuromyelitis Optica (NMO) I spent 6 months recovering from a Transverse Myelitis attack and in the process was let go from my job. It was absolutely devastating to be in recovery and then lose one’s identity. Now that is has been several years later (with my career back on track, a marriage, a new house, and a baby) I can look back and be thankful that my path has led me to the words, “I quit my job”.

Although I can’t speak quite yet about what I’ll be doing next, I can say that it is of no surprise to anyone who knows me well that I have a few tricks up my sleeve. Before NMO I felt invincible – I was young, ambitious and fearless. NMO took me down a couple pegs but it hasn’t defeated me.

As I see it I’m more prepared now for a challenge then I was before. I’m a Mama Bear now so I truly understand what it means to fight for my cub. And I have the amazing support of my husband – he’s my coach in my corner telling me when to throw my left hook. And like NMO, which is a relentless disease, I’ll fight with a vengeance over and over again. NMO has made me a more real person.

I know I’m one of the lucky ones. Every morning I throw my feet over the bed and hold my breath until I’m sure I can feel them touch the ground. So, in a big picture kind of way, it wouldn’t be fair if I didn’t fight the good fight for each and every one of you in my NMO family.

“Out there in some garage is an entrepreneur who’s forging a bullet with your company’s name on it.” -Gary Hamel

Patient Day 2012

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Patient day 2012

Patient day this year was very interesting first having Allen making his appearance this year since I was pregnant with him last patient day. It was also exciting for patients and caregivers getting to meet him since I blogged about my pregnancy the entire time. Everyone felt like they already knew him which was very exciting for Eric and I. I was just so flattered and speech less from people telling him how handsome Allen is and he is such a good baby. Allen defiantly started a fan club in LA.

Two very exciting things happen this year at patient day the first was Victoria Jackson and Ali Guthy released their book “Saving each other.”
The second was the release of the patient resource guide “What you need to know.” I have only flipped through a few pages on both books and it is hard to decide which one to stick to and finish the book. I have handed out several copies of the resource guide to my family members so they are more educated on NMO and what I go through. I am sure all of us get sick of hearing “ You don’t look sick.” Well I am read the book and understand how well I mask what I am going through.

I really did not get to stay and listen to all the Q and A panels since Allen wanted to go move around. I did get to go to some of the breakout sessions. The one I really enjoyed was on diet and nutrition with Elizabeth Yarnell since she is diagnosed with MS she understands what is the most healthy diet for us NMO patients. The other neat breakout session was the Patient Advocacy with Dan Behne and Derek Blackway it was really great to hear what other NMO patients are doing to help spread the word about NMO.

At the end of patient day it was just amazing looking all around the ballroom seeing so many NMO patients there with their caregivers. Every year patient day keeps growing with newly diagnosed patients that need help finding out more about NMO and then there are the patients that have been coming for years and just want to talk to our NMO family face to face. This year was my third time coming to this wonderful event. I loved I got to meet so many new patients this year in person since I have talked to them in the support group but now I have got to meet them in person.

Thanks again to Victoria, Bill, and Ali for all the wonderful things they have done for NMO. Let us all keep spreading awareness about NMO!

03
Nov 2012
POSTED BY Erin
DISCUSSION No Comments
TAGS

Valuable Links

http://www.huffingtonpost.com/ali-guthy/neuromyelitis-optica_b_1952866.html

An excerpt from Ali Guthy and Victoria Jackson’s new book.

http://ectrims2012.eventresult.com/default/index

The European MS conference with an entire session on NMO.

https://conferencecenter.msworld.org/ectrims-2012/day-three/neuromyelitis-optica

MS World.org conference discussing NMO and how Zrytec, the over the counter allergy med, might help.

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HAPPY RARE DISEASE DAY!


Yes, I’d like to think it is a happy day because we’ve all made it one more year.  Living with Neuromyelitis Optica (NMO) can be a real pain so I’m very proud of each and everyone of you in our NMO family for continuing to fight forward and fight together.

This is also NMODiaries 1 year anniversary.  A year ago, Christine, Erin and I started NMODiaries almost as a therapeutic tool.  NMODiaries is place where we motivate each other, have a place to showcase our stories to our family and friends so they better understand our day to day lives and often, a place where we take a moment to laugh at ourselves.  By sharing our lives, we were completely surprised by how many other patients reached out to us to tell us their stories – in an attempt to inspire each other, we were inspired by you.  So, thank you for sharing your lives with us too.

Therefore, in honour of our 1 year anniversary and Rare Disease Day, we asked you, “What was your greatest accomplishment this year?”

 

 

 

“Had twins!  My boys are not just my year’s accomplishment but my life’s.” – Elizabeth Goble Brammer

 

 

 

“Although I’m in a wheelchair 90 percent, I was able to Zipline (9 lines) in Hawaii last February.” – Joni Ignacio Matthews

 

“I’ve been smoking for over 30 years and had been trying to quit for the last 3. I made myself a promise that I would be smoke free before the Guthy Jackson Patient Day last November and I was able to do it. ” – Lynn Copeland

 

 

 

“My husband reminded me that I did get my motorcycle license, and bought a bike. And, I over came my fear of heights, and went zip lining. ” – Paula Dean-Luce

 

 

 

“I got hand controls installed in my van and got my independence back!” – Tracy Owens

 

 

 

These are just a few of the great responses we received.  For more inspiration, check out the Devic’s Disease group or the My Devic’s Family group on Facebook.