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
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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.

New year brings new experiences…like plasma exchange

Happy 2012! And in a few days on January 23, I shall say, chuc mung nam moi! as it will be the Lunar New Year, the Year of the Dragon.

The year of 2012 was off to a rough start for me. In November, I had my usual Rituxan treatments, but for some reason unbeknownst to all, my vision worsened a little after the first round. The doctor wanted to wait to see if my vision improved after the second round of Rituxan, especially since I was also receiving IV steroids (to stave off any possible allergic reactions to the Rituxan) prior to each chemo. Alas, my vision wavered back and forth from its previous baseline to worse again. Eventually, I was ordered to take 160 mg of Dexamethasone. Swallowing 20 little blue pills twice a day for five consecutive days was not the hard part—it was all the side effects that came alongside it: insomnia, restlessness, bloatedness, intense voracity of the appetite, and last but not least, moodiness (my husband may want to argue that I should stop blaming the steroids for this). Needless to say, I am at the heaviest I’ve ever been in my life, and I am not the least bit un-moody about it. I guess God is giving me sympathy weight gain with Erin…

I am ever the optimist though, and I must say all the restlessness and insomnia and insanity paid off because my closet was on its way to becoming the cleanest closet of the century. Instead of going to bed at a decent hour, I would methodically go through all our shirts and pants and decide which should be donated and which should be hung up and where. I even went through all of John’s shirts and my cardigans and buttoned the top button so as to keep them neatly on the hanger. And so all my neuroses come out with the steroids…

Steroids also tend to make me nest. That is, not only do I organize the closet, I start organizing and reorganizing the house. I recall a previous year when the steroids made me take apart my entire bookshelf and re-stack the books according to genre and then alphabetical order by author’s last name, first name. This time, since my bookshelf has remained in order, I decided to go crazy and shop for cute butter dishes, fancy floor cushions, and fake plastic fruit to display on the buffet cabinet. Yes, that’s right, I spent John’s hard-earned money on Granny Smith apples that we can’t even eat.

But that’s what made me happy, and John so kindly let me slip on by with my artificial bushel of artificial apples just because he is a good husband and knew there are just some things in life not worth picking a bone with (like me on steroids).

After the steroids had all been swallowed, the doctor decided to order five rounds of plasmapheresis or plasma exchange (which we’ll call PLEX for short). I had never had PLEX before though I’d heard it’s been effective in treating acute Neuromyelitis Optica/NMO attacks. Most patients have to check into the hospital as an inpatient and get a central line inserted in order to get PLEX. Dr. Greenberg, however, knew to ask me the pertinent questions that would determine the PLEX route we’d take. He asked me: (1) how much worse did my vision get from baseline; and (2) has my vision change affected my daily activities, and if yes, how much? I said: (1) 10 to 15 percent, and (2) not much at all. Together, we decided the optic neuritis was not serious enough (I know what you may be thinking—that all NMO flare-ups are serious, but you must understand that my vision is so poor already that the minimal change I experienced wasn’t that cumbersome) to call for such an invasive and inconvenient procedure such as getting it done with a central line. And so Dr. Greenberg said we would only move forward with the PLEX if he could find a clinic in Houston that would do it peripherally as an outpatient procedure.

He made some calls, and the next thing I knew, I was sitting in the Blood Donor Center at Methodist Hospital in Houston’s Med Center getting both arms poked with needles. How ironic is it that my previous neurologist whom I was under the care of for years used to take forever to treat me, and I often complained about his lack of timeliness. And now that I’m Dr. Greenberg’s patient, he moves so quickly that I barely had time to mentally process the idea of PLEX and thus had a few mini-breakdowns because, frankly, I just didn’t feel ready to encounter a new procedure.

I was assured by both the medical professionals and friends that the PLEX would be beneficial with minimal risk so I should not worry. But having to go in every other day for 1.5 weeks to get two needles put in each arm and then sitting there not moving for 2 to 4 hours and having a pressure cuff tighten the hell out of my upper arm all the while having to squeeze a ball in the same hand even though my fingers were going numb were enough to drive a person to tears. And that’s exactly what happened during one of my PLEX rounds.

Regardless of the bumpy road, I’m glad to report my last PLEX (for now) was yesterday. I survived them though my arms are quite banged up. But that’s how life is—we get knocked around a lot, and what I learned from all this is it’s okay to cry and get angry and yell and feel sorry for ourselves if only for ten minutes a day. I learned that we need to honor our raw emotions, that we’re not loving or respecting ourselves if we are not honest with ourselves. And then once we let it out, we must pick ourselves up and move forward, even if it just means putting one foot in front of the other and taking it a step at a time, minute by minute, day by day.

So with the Year of the Dragon just around the corner, a new era is on the horizon. Let’s make the most of what we’re given, be thankful for what we have, and remember that we are still human: embrace the humility.

And with that, I leave you with some pretty photos of Christine’s PLEX 2012.

Getting my plasma on

Patient Day 2011

THANK YOU THANK YOU THANK YOU to the Guthy-Jackson Charitable Foundation for arranging yet another successful Patient Day.  Thank you so much for having us and always being in our corner.  Patient Day was a great chance to re-educate and receive new information on Neuromyelitis Optica (NMO).  More than ever, I’m confident that they’ll find a cure one day.  Some exciting stuff I gathered from the event:

  • An aquaporin map treatment is in the works to creat good antibodies.  A paper was recently released by Dr. Alan Verkman.
  • Talk to your doctors about the flu shot but in general, the benefits usually outweigh the risks for NMO patients.
  • Be more active and wash your hands!
  • Remember to get regular check ups like the rest of the population (ie. Melanoma could be a side effect of long term use of Cellcept).
My favourite break out session was definitely the Nutrition and Diet.  Led by John Pierre (who is Ellen Degeneres nutrition guru), he made a very effective argument towards a plant based diet.  Having tried a vegetarian lifestyle for a couple of months this year, I did see results and did feel much better.  I came home energized to try it again and so far in the last couple of days I’ve lost a few pounds and have regained some of my energy.  Although, I did try his gluten free, sugar free blueberry muffin recipe and I’m honestly not a huge fan.

Here are a few highlights from our trip:

 

Jenna

Flying solo (and other challenges)

Next week is the 2011 NMO Patient Day sponsored by the Guthy Jackson Charitable Foundation to be held in Los Angeles. At this same event last year was where I met Erin and Jenna and where the idea of NMO Diaries was born. This year, all three of us are reuniting in L.A. but I am going sans husband.

John had just started a new job so vacation days are minimal. It will be my first time flying alone since my vision loss, and had this been one or two years ago, I would’ve been having conniptions pre-flight. But over the years, I’ve grown a little more comfortable, a little more secure, in my sightlessness, and I’ve decided to brave the trip solo this time.

Becky Maher, the travel agent from Spirit of Travel, ensured me that the airport and airline employees would help me find my gate, my way on and off the plane, and where I need to go once we land in L.A. All I have to do is find a curbside employee or the ticketing counter. Luckily, Erin and Jenna both scheduled their flights to arrive around the same time as mine so they can receive me at my gate.

I remember with each subsequent worsening of my vision over the years and with less and less things I could do independently (e.g. driving, then walking), I would be ridden with fear and anxiety. I pitied myself, wondering how I would survive life “this time.” When my vision worsened to 20/200 in one eye and “counting fingers” in the other back in 2004, I wasn’t ready to let go of any independence. It took me almost a full year before I listed my car for sale. “At least I can still walk by myself,” I thought.

Then in 2007 when my vision worsened to “counting fingers” in both eyes, I could no longer walk independently. I either needed a guide or a cane to get around. I despised my cane; it made me feel different.

Four years later, and we come to today. And while I am not going to lie and say I’m equal to everybody else, that I can do everything everybody else does, I have learned to embrace my disability just a little bit more. I’m not saying I’ve become completely used to it or that I’d choose being blind over being sighted. I’m saying I’ve learned to adapt as best as I can thus far, and every new experience presents an opportunity for me to learn how to overcome it. I’m not equal. Being blind makes me different, and it’s a fact I’m not denying. But it doesn’t make me less of a person. It has taught me to think more, feel more. I think more about how to solve a problem, say, how can I organize my kitchen in such a way that allows me to cook an entire meal independently? What tools can I acquire that will help me roast a rack of lamb (which I did last night)? And I feel more because I’ve become much more understanding of other people’s shortcomings whether physical or mental. Everyone’s got problems. It doesn’t matter whether you’re Kim Cardashian or someone with NMO. If it’s not marital problems or health issues, it’s something else.

I’m not much of one for adventure. I wanted to puke (literally from the motion sickness) when I went skydiving. No matter how much I love traveling, I am always homesick by the end of the trip. But new things, new experiences, are necessary in life. Challenges are necessary. How else will we grow?

Writers are often seeking out the new. We chock it up to a need for material. We say we’re searching for our muse. This generally goes against the grain of my inherent personality, but next week, I’m both a little nervous and a little excited to go on my first solo flight as a blind person. If I survive, I can feel good about myself: “Here is another thing I’ve overcome.” And if I don’t, well, it’ll make for a good story.

All three of us ladies behind NMO Diaries will be at Patient Day. For those attending, we hope to meet you. For those who will be watching from home, we say hello and hope for a next time.

03
Nov 2011
POSTED BY Christine
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