5 Years Living with NMO

Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.

Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.

It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.

Heat Intolerance and NMO

I have a love/hate relationship with the sun.

The winter was long and extra cold this year. I felt an overwhelming sadness by the constant darkness, so much so that we took two trips down south just so I could feel the vitamin D warm my skin. The natural sunlight gives me a boost of energy, it helps me recharge and most importantly it helps calm those pesky neuromyelitis optica (NMO) symptoms that happen in the cold. But too much of one thing is a bad thing…

Now I find myself in the heat of the summer, already scanning the Internet for hotel deals to stay in Whistler next winter. With the heat comes a different set of NMO symptoms that plagues me. The fatigue bothers me the most because I always have a jam packed day and love to keep up to my almost 2 year old daughter. I’m irritated by the weakness in my hands, quietly cursing under my breath each time I’ve almost dropped a mug or struggled to undo a bottle cap.

They call it “psuedoexacerbation”, where symptoms seem or actually do get worse. It can happen in the cold and/or the heat, exacerbating different or the same symptoms. If you’re unlucky like me neither climate is preferred. The cold/heat can slow the nerve impulse transmission to the already damaged parts. Fun, right?

I’ve tried the cooling vests, ice packs, etc. with little or no success so like everything else in life (and this disgusting disease) I find planning helps make things a little easier. Not that I avoid the heat but I’m strategic about when I expose myself. The sun is at its highest early afternoon so I get my tasks done inside then. I take walks or bike rides with the family after dinner time and fortunately my husband does all our yard work. If I find myself in the sun midday I take my time, take breaks and try to drink a lot of water. And always schedule in time for rest afterwards.

It’s much more convenient to take the easy route and complain about NMO but instead I choose to consider it a disciplined way of life, one that requires me to always plan ahead.

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!

 

 

 

 

 

Help Take NMO to the Next Level: Complete This Clinical Trial Survey

I always reminisce about how the Guthy Jackson Charitable Foundation’s 2010 NMO Patient Day was the catalyst for the birth of NMO Diaries. That’s why I have a soft spot for GJCF and its mission to better the lives of those affected with Neuromyelitis Optica/NMO through advancement of therapies and search for a cure.

The latest project at GJCF is a clinical trial survey that will bring together people living with and blood-related to those with NMO into a pool of possible clinical trial candidates. Filling out the survey doesn’t automatically enroll you in a clinical trial; rather, it helps measure your knowledge of and willingness to participate in clinical trials.

I, myself, have enrolled in a few clinical trials before, and yes, it takes time and resources, but I participated because I have hope for the future generation that NMO can one day be a thing of the past, like polio! Whenever I have the time and qualifications, I make an effort to contribute whatever I can to better the lives of everyone affected by NMO, including myself.

Even if you aren’t sure, I encourage you to complete the GJCF clinical trial survey and be part of a movement to improve our lives.

01
Jul 2014
POSTED BY Christine
POSTED IN

NMO

DISCUSSION 2 Comments

NMO 5 km Walk/Run 2014

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Clockwise: Event organizer Nancy Reimer, UBC NMO Specialist Dr. Tony Traboulsee, Event sponsor Tim Horton’s brought coffee & Timbits, Coquitlam City Council member Bonita Zarillo & Lelainia Lloyd.

June 1st, 2014 was a beautiful day. It wasn’t just that the clear blue skies and warm temperatures that made it so, but the gathering of 500 individuals who showed up at Rocky Point Park in Port Moody, British Columbia, Canada to raise awareness and funds for Neuromyeltis Optica. This year’s theme was “I am Courage. I am not alone. Standing together to find a cure for NMO.”

I was supporting someone recently who said that the most difficult thing about having a chronic illness is the feeling of being alone. The normal pattern of illness is that you visit a doctor, they give you a treatment, you follow that treatment and you get well. When you have a chronic illness, you just go round and round in a never-ending cycle of varying degrees of being unwell. It can be hard for healthy people to wrap their head around this concept or to understand how alone this can make you feel when your illness is not only chronic, but also rare.

 

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Clockwise: Volunteers helping with registration, UBC NMO Researcher Annie Kuan, The crowd listening to opening remarks, Event organizer Nancy Reimer & son Riley welcoming everyone.

 

For those of us who were fortunate to be present for the NMO walk/run, it was a unique opportunity to connect in person with others who share the same rare diagnosis. When you put two or more NMO patients together, we are immediately interested in comparing notes: When were you diagnosed? How old were you? Who’s your neurologist? What drugs are you on? What treatments have you had? What are your symptoms? One of my fellow NMO patients asked me if I’d ever been paralyzed and while I as answering her question, I was thinking to myself how bizarre it was that this kind of question seemed perfectly normal. Even though we’d just met, there was an instant feeling of kinship and understanding between us.

I won’t go into a run down of the day-my friend and event organizer Nancy Reimer has done an excellent job of that here. You can also watch a 5 minute video made with everyone’s photos from the event here. What I will say is that having our friends, family, health care professionals and community gather together meant so much to those of us who are battling this disease. Their actions speak louder than words.

“There is a community of spirit. Join it and feel the delight of walking in the noisy street and being the noise.”   -Rumi

 

16
Jun 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments

Invisible Disability (and getting yelled at for it)

I like to call my handicap permit my “Princess Parking”. I joke around about my permit and its convenience but if I’m being serious I’d rather walk a mile to the doors than live with neuromyelitis optica (NMO). I don’t look sick. I don’t live in yoga pants and hoodie sweaters. I don’t move horribly slow. I don’t have a walking aid (anymore) and I’m not a senior citizen. Instead, I try to always dress well, I’m usually carrying a toddler and you can bet that I’m distracted and in a hurry.

I don’t look like someone who should have a handicap permit. But I do. I have an invisible disability.

I haven’t felt my toes since 2009. Several spots on my body at any given time always feels like it’s on fire. My spine feels like a puppet master is pulling it out from the top of my head. And moving my legs or not moving my legs for an extended period of time (anything beyond 3 minutes) causes pins and needles. Having the permit does make my day just a little bit easier and I’ll take it.

So it’s frustrating when sometimes I get out of the car and people give me a dirty look or even yell at me.

I used to ignore their comments but then I’d find myself quietly stewing in my head. Then I started to see it as an opportunity to educate ignorant strangers on perception and creating awareness for NMO but that’s time consuming if I had to stop and chat every time. Truthfully, I even shoot a dirty look back if I’m in a bad mood and swear under my breath. It rarely happens because my husband is a 6’5” giant but occasionally folks will make comments when he’s with me and he immediately goes into defense mode (I won’t lie – it’s sweet and romantic).

Living with NMO is hard and frustrating. My normal every day is living with pain but I don’t like to dwell on it. I go about my activities to the best of my ability and forget that NMO lurks in my shadow until someone screams, “faker” or “that’s so wrong to use someone else’s permit”. I’m still trying to decide how to react when this happens and I’m looking to the NMO community for your ideas. Maybe there isn’t a perfect solution because people will think what they want to think.

The State of Me

steroids

May has been a trying month. At the beginning of the month, I had to have a round of IV steroids. Day one went okay. When my friend Nancy Reimer heard I was having treatment, she offered to come hang out with me and brought me chai. My friends have always been so great about keeping me company when I have infusions. Nancy and I had a nice visit and talked about the NMO 5km walk/run that is coming up in the beginning of June.

Day two was a disaster. I had a hep loc in and so when I arrived for the second round, the nurse just hooked me up. I sat quietly reading an e-book. About ½ hour into the infusion, I just happened to look down at my arm and realized the IV line wasn’t plugged in! It had become disconnected and there was a giant puddle of steroids all over the floor beside my chair. I jumped up and cranked the little flow regulator on the line, shut the electric pump off and then went in search of someone to help me. I was the only IV patient that day and my nurse had hooked me up and then vanished. It took me about 5 minutes to find someone who could track down my nurse. The nurse ordered another bag of steroids and I had to start all over. She hadn’t screwed the IV line into the hep loc properly. ARGH!

Day three, it was a struggle to get up, get dressed and make my way to the hospital for the final dose. I was feeling the effects of the steroids and it wasn’t good. I thought I had done my due diligence in making sure I had the right meds to protect my stomach from the steroids, but apparently not. This time they weren’t strong enough and even though I doubled my dose, I was in excruciating pain. I felt like I was getting an ulcer and my throat was absolutely burning and raw. (The joys of steroid induced acid reflux!) The pain was so bad, I couldn’t eat or drink anything, which wasn’t helping matters. I ended up going to see my family doctor and she wrote me a prescription for a stronger medication which ended up costing a small fortune. ($96!) It took several days for the pain to subside and my throat to heal.

Meanwhile, I was utterly exhausted. The day after my last dose of steroids, I had an event to attend. I went, but honestly, that evening was a blur, both literally and figuratively. I honestly couldn’t tell you what the artists who were giving presentations said. The only thing that stands out for me was that I met some really nice people-that and the fact that at this point, my vision started to go wonky. I came home and spent the next 5 days practically in a coma. I slept for hours on end and could not get out of bed. No matter how much I slept, I just felt completely drained.

It’s now been 3 weeks since my treatment and I can’t say it’s helped me any. I still have this zapping electrical buzz down my left leg constantly. My vision has been very up and down. The crushing fatigue I had right after the steroids has mostly resolved-I always have some level of fatigue, which I think is from being on a fairly big dose of Imuran, which for me acts like a sleeping pill.

In my history of being treated with steroids, I can’t say that I’ve ever had the kind of results they are supposed to have. It’s in no way a magic bullet for any of the symptoms I’ve had. What I have noticed is that each time I have steroids, the side effects seem to get worse and it’s that much harder to recover. It’s not a good trend.

I know we all want a cure for Neuromyelitis Optica but in the meantime, I wish we had better treatment options for it too.

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

Jenna’s trip to Mexico (2014)

We’ve just returned from a beautiful family trip in Mexico again. I love Mexico because of the calmness, the air, the kind hearted people and of course, the warm weather. We once again stayed at a Karisma property, which we were introduced to several years ago when we were planning our wedding. We were scheduled to be married in Jan. 2010 at one of their adults only properties but had to cancel in Sept. 2009 when I became really sick with neuromyelitis optica (although at the time we thought it was just transverse myelitis).

At this Karisma property it is a family resort but they still offer the same caliber of wedding we had once hoped for. Now I have to say that we had a beautiful day in July 2010 here in Toronto but geez, for the entire week every time I saw another bride go all teary eyed down the beach I got a little angry. I’ll be the first to say that I’m ridiculously happy – I have a wonderful marriage and the most amazing little girl as a product of that – but this was the first time I felt such rage at NMO for robbing me of something. For the last 4.5 years I’ve just dealt with this stupid disease always saying ‘this too will pass’ but I dunno, I think I’ll always be angry at NMO for taking away my beach wedding.

For those of you with NMO wondering what flying is like, I’ll tell you that it’s less fun for me now than it used to be. Even though we use the stroller friendly/handicap line through the security checkpoints, the airport feels like you’ve run through a gauntlet. I find sitting still for extended periods of time painful and within the hour my spine swells, the pins and needles return in full force of all extremities and I can always count on an eye ache. The worst part is having to suffer in silence because once you take off there’s really nothing one can do except pray, try to sleep and/or drown myself in the horrible inflight movie. There are things I do to minimize the flying experience. The day before and after the flight I reserve for sleeping/resting. I stay hydrated and take a pain killer before I board. During the flight I get up and head to the bathroom to wash my face, which I find helps keep me calm. And I remember the destination is either a happy place or home, sweet, home.

Sophie truly enjoyed playing in the sand and experiencing new cuisine like guacamole and beach BBQ paella. I absolutely loved the sunshine. It’s been so dreary and cold in Toronto for so long that I had missed the fresh air and the vitamin D. Within a day I felt rejuvenated, more rested and the exercise of swimming, walking and smiling almost made me forget I have NMO.

 

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Just Say No (Sometimes)

In 2012, I was sequestered for months shooting MasterChef season 3. Even before I was revealed as the winner on national television, my story as a blind cook and contestant on Gordon Ramsay’s competitive cooking show had already begun to make press and media headlines. Since then, I’d attended scores of events as a speaker, culinary instructor, chef d’cuisine, or simply a (and it’s still weird for me to use the word as an identifier) celebrity. I’d written a best-selling cookbook, promoted that cookbook, appeared on MasterChef Vietnam, and became a co-host of a cooking show called Four Senses in Canada. And I still managed to complete my MFA in Creative Writing.

Erin often asks me how I find any time in between the traveling and the to-dos. Jenna tells me she’s proud of me, but am I taking care of myself? My friends and family are happy for me but wonder how I manage to do it all.

The truth is, I don’t. I don’t do it all. Something I’ve had to learn over the past couple of years is how to say no. It wasn’t (and still isn’t) easy for me to say no. Maybe it’s the Asian or the woman in me—I hate disappointing people. In the beginning, I said yes to everything. Yes, I’ll attend and speak at your _____. Yes, I’ll donate a signed _____. Yes, I’ll teach a cooking class. Yes, I’ll answer your cooking questions over email. Yes, I’ll do this interview. Yes, I’ll write that article or essay.

But then I noticed how the number of yeses I said was inversely related to my happiness. I stopped sleeping. I felt like I was Indiana Jones stuck between two enclosing walls. If I say yes, I get exhausted, but if I say no, I disappoint someone.

In the end, I realized that sometimes, I just need to put ME first, especially as someone who (and many people forget this) still lives with Neuromyelitis Optica/NMO. I learned I shouldn’t do something unless I can do it willingly and joyfully; otherwise, I’m just cheating myself and others in the process.

Many people who know me personally and even those who have watched me on TV say they can tell what I’m thinking or feeling just by looking at my face. I never knew I was so easy to read, but if this is the case, I would feel worse if people saw how begrudgingly I did something that was supposed to be a favor. Plus, I tell myself, if I’m not in a place where I feel physically, mentally, and emotionally well, then what’s the point? You have to take care of yourself first before you can take care of others.

So there’s the truth for you: I really don’t do it all. I turn 35 Friday, and after having lived with NMO for over a decade and maturing into my mid-thirties, I’ve learned to be in tune with my body and mind. I’ve learned to be a little selfish at times. I know when I feel neuropathic pain in my ribs, numbness in my toes, or when I get body chills and aches, that it’s time to set everything aside and catch up on sleep or rest. The world can wait.

So this is me telling you it’s okay to not do it all sometimes. We don’t always have to be Superwoman, Supermom, Superwife, Superfriend, or Supercolleague. Sometimes, it’s okay just to be an imperfect, tired version of yourself. Sometimes, it’s okay to just say no.

05
May 2014
POSTED BY Christine
POSTED IN

career, Everyday life, NMO

DISCUSSION 6 Comments