Surviving Summer

mexicanchefsalad The last 2 weeks on the west coast of Canada have been HOT. For those of us whose NMO symptoms are exacerbated by heat, this time of year can be challenging. One of my biggest challenges in the summer is dealing with dinner. By the time dinner rolls around, it’s super hot in my house (our house faces east and gets full sun all day) and as a result, I am fatigued. The last thing I want to do is cook.

Here are some of the things that help me cope and make sure we’re still eating healthy:

When it’s too hot to cook I will either make an effort to prepare anything that needs to be cooked on the stove or in the oven early in the morning when temperatures tend to be cooler. Later, I can reheat using my microwave. I try to choose foods for the majority of our dinners that can be cooked on the BBQ but another great option is using a crockpot. You can cook an entire meal in a crockpot without heating up the house and loading it up usually takes less than 10 minutes.

 

Here are some of my go-to crockpot meal ideas:

-A whole chicken & veggies: Add a cup of water or sodium free chicken or vegetable stock to the bottom to prevent sticking and to thicken into gravy at the end. I season the chicken with fresh rosemary, garlic, paprika & black pepper. MMM!

-Chili: This is about 5 minutes of prep time and can be eaten as is or become chili dogs, sloppy Joes or as chili over a baked potato. I use my own basic chili recipe which is crushed tomatoes, black beans, kidney beans, corn, onions, peppers and seasoning. In the summer, I use Yves veggie ground round (a vegetarian option!) as the protein so I don’t have to fry ground beef (or in my case, ground buffalo) on the stove. I add it to the chili about ½ an hour before serving.

-Shredded chicken fajitas: Pour a large jar of salsa into the bottom of your crockpot and then lay boneless chicken breasts on top. Just before dinner, remove the chicken and shred the using 2 forks. Mix shredded chicken with the salsa in the crockpot. Serve rolled in tortillas with sour cream, grated cheddar cheese and guacamole.

*Note: I start these meals at about 8 am and let them cook all day till 5 pm. Check your crockpot manual for cooking times and temperatures.

 What would summer be without salads? Years ago, everywhere you went, there were salad bars. Oddly enough, I enjoyed having salad for dinner and so did my husband. I’ve managed to recreate a salad bar at our house. I spend about an hour chopping up our favourite veggies, boiling some eggs & peeling them, grating or cubing cheese, draining & rinsing a tin of garbanzo beans and so on. I usually buy a big box of mixed greens. We like pickled beets, cottage cheese, sliced ham and turkey and croutons as well. I organize everything in individual containers in our fridge. When dinner time rolls around, I put all the fixings out on the counter and we assemble our own salads. An hour’s work pays off in providing enough fixings for 2-3 meals. Prep once, eat twice-that’s a win in my book!

 Another way I cope with preparing meals in the summer is to serve dinner on paper plates. It’s just my husband and I, but we don’t have a dishwasher and who wants to stand over a hot sink in 30C temperatures? Not me! I live in a very eco-friendly part of Canada where we’re able to recycle paper plates into our weekly compost, so I don’t feel overly guilty about doing this. Also, my hands are incredibly numb and the heat makes it worse so I tend to break a lot of dishes in the summer. Believe me, paper plates are cheaper & safer!

Some nights, I am just too exhausted to cook and we either get take out or go to a nice air-conditioned restaurant nearby. Sometimes I just have to give myself permission to cut myself some slack. Is it just me or does food prepared by someone else always taste better?

So, I’d be interested in knowing how you cope with the things you find challenging in the summer heat and I bet our readers would to. Leave a comment and let’s beat this heat together!

 

*Photo: Mexican Chef Salad, a favourite at our house!

21
Jul 2014
POSTED BY Lelainia Lloyd
DISCUSSION 1 Comment

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 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.

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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