Patient Profile: Grace Mitchell

We are starting a series titled, Patient Profile, to highlight other ambitious individuals living with NMO (neuromyelitis optica). We want to share their stories as examples of how we’re in this together.

Today we feature Grace Mitchell, which many of you know as our Facebook patient page moderator.

1. NMO stats (diagnosed since, number of attacks, treatment centre, age if you’ll disclose).

I first became ill in April of 2005, when I was 52 years old.  I had gone  to bed one evening after work, and awoke the next morning to find myself paralyzed and without bowel or bladder control.  I was taken to the local hospital, where lab tests and an MRI were performed.  Unfortunately the MRI was only of the lumbar spine (my very large lesion was in the thoracic spine)  and the on call physician was unable to find a cause for my loss of function, informing me that it was likely hysterical paralysis caused by conversion disorder.  By the next morning the paralysis had moved up my chest, and I was ambulanced to the University of Pittsburgh Medical Center, where I was initially given a diagnosis of Idiopathic Transverse Myelitis.  After several weeks in the hospital and a subsequent stay in a rehab facility, I was finally able to come home.  Roughly eight weeks out of rehab, I again found myself paralyzed and was sent back to the University of Pittsburgh, at which time my case was handed over to Dr. Rock Heyman, Chief Division of Neuroimmunology/MS, who diagnosed me via the Mayo Clinic’s NMO IgG test.  He’s been my neurologist since that time, and has gone above and beyond for me.

2. You’re known as a leader in the NMO community. When did you first get involved and how?

At the time of my diagnosis, there were only about 800 documented cases of NMO in the US, so I immediately set out looking for other patients.  I was lucky enough to be contacted by Tim Mulvihill whose partner had also been very recently diagnosed.  We spoke on the phone for about six hours that first night, and by the end of that first phone call had decided to start an advocacy group for fellow patients.  We didn’t want it to be simply a support site, rather we wanted to actively and tangibly impact the patient experience in a positive way.  The only way to do that was to first educate ourselves about the disease, so we dove into what scant research there was available, and also started contacting physicians and members of the research community.  I am not  exaggerating whenever I say that our lives immediately became as busy as Grand Central Station.   The patient response was incredible.

3. Because of the nature of your work as a moderator we know you’ve become close to so many patients. Knowing about their individual hardships with NMO, how do you stay positive and impartial on a daily basis?

It’s so very difficult to remain in a positive frame of mind when dealing with fellow patients who are often very frightened, and sadly, profoundly disabled.  Because I have worked so hard to build my credibility with the wonderful researchers of this disease, and because they in turn have always been so kind to me, I work very hard to handle myself in a professional manner, despite not being a professional.  That being said, I often find myself in tears after speaking with a fellow patient who is desperate for help.  It’s a very emotional experience.

4. We want to know more about who Grace is. Tell us about your day to day activities including your hardships with NMO.

My personal identity has become so entwined with NMO that it’s hard to see where the disease ends, and I begin.  It’s so important for me to keep my mind vital and alert, so in my spare time I read anything and everything that I can get my hands on.  Science, history, politics, and biography, books and articles are my personal favorites though I do read a bit of fiction (it’s a wonderful escape).  I also enjoy listening to music in my spare time, with blues (particularly old Delta blues) and classic rock being my favorites.  Physical activities are difficult for me these days due to the intense fatigue that often comes along with NMO.  Just an outing to the grocery store wears me out and puts me to bed, so chilling at home with a good book and my cat has become my favorite activity, with the exception of spending time with my beautiful little 4 year old granddaughter.

grace

5. Personal relationships can be tough in the best of circumstances. What advice do you have for NMO patients to manage relationships of all types (love, children, as a grandparent, family, friends)?

Managing any type of relationship is difficult when also dealing with a chronic disease. Often, family, friends, and significant others, don’t understand the physical limitations that accompany an NMO diagnosis. Whenever I say that I am tired, it’s not the same kind of tiredness and fatigue that a healthy person might experience after putting in a hard day at work, rather it’s an overwhelming feeling of total exhaustion that isn’t necessarily remedied with a nap, or even a full night’s sleep. My advice to other patients is to give as much as they can to their relationships, but to know their personal limits. Another important thing to remember is that as patients, we can’t expect others to *own* our illness. The world doesn’t stop just because we are ill. Most of our family and friends are sincere in their efforts to understand our situations, but because they have not experienced it themselves their understanding is limited, and that’s not their fault.  Sometimes, we as patients need to take a step back and realize that the world does not revolve around us simply because we have a chronic illness.  Does that sound harsh? Maybe, but it’s the truth as I know it.

6. What keeps you personally motivated and what keeps you fighting?

That’s an easy one to answer, my desire to be of help to my fellow patients.  Whenever it’s all said and done, we’re all in this together.

7. Tell us a moment when NMO embarrassed you (if ever).

You know, despite NMO being a difficult disease to deal with, it does have it’s humorous moments. Shortly after my second bad attack whenever I became able to walk a bit in my walker, I got a ride to my local pharmacy to drop off some prescriptions.  As I exited the car, I got that painful burning rush that always precedes a bout of tonic spasms, and before I knew it the pain hit me and I was lying on the pavement. Now, if you’ve ever experienced tonic spasms, you’re fully aware that they’re not the old garden variety charley horse, rather they’re screaming pain, and I do mean screaming and I WAS screaming.  So there I was, lying there on the sidewalk with my shoe off, my right leg all bent askew, my arms stiff as boards, my right ear pulled down to my shoulder, my mouth wide open, and all the while I was screaming for help.  Several pedestrians came and stood around me, but not one would intervene (I think I probably scared them to death).  Finally, out of the pharmacy marched my very favorite cashier who told the people to move along that there was nothing to see there, and scooped me up and helped me limp into the store.  Talk about being embarrassed!

8. In your opinion, what needs to change about the medical system, the NMO community and the pharmaceutical industry?

Whenever it comes to our medical system, I think that the biggest issue for NMO patients is the fact that most general neurologists are not educated about the disease.  If you’re lucky like me, you’re seen at a large teaching and researching facility, but unfortunately that’s not feasible for many patients who end up having to depend on neurologists in rural areas, and to utilize facilities that are less than stellar.  As for the pharmaceutical industry, they are both friend and foe.  I hear patients complain all of the time saying that the pharmaceutical companies have cures that they don’t want to share due to financial gain.  I do not think that’s the case.  Patients don’t understand the enormous amount of time and money that goes into developing a drug, nor do they understand the red tape that must be waded through to get a drug to clinical trial.  If trial results are satisfactory, the next step is getting FDA approval and that’s not something that’s instantaneous, in fact it can take years.  Then there is the fact that some of the drugs that we use are exorbitantly expensive and the insurance companies are reluctant to cover them, meaning that  patients must jump through hoops and are often denied several times before the treatment is finally approved by the insurance company—if it is approved at all.  On the other hand, if not for these pharmaceuticals many of us would be in much worse shape than we currently are.  It’s a case of six of one and a half dozen of the other.

9. What do you think should be the next steps in finding a cure for NMO?

As for one day finding a cure, my feeling is that the cure will come via the amazing research that is currently being  conducted concerning tolerization.  The whole concept is huge for NMO research.  While it’s unlikely to occur during my lifetime (I’m not a spring chicken anymore), I do believe that it will happen, and that will be an amazing day.

10. Finish this sentence; Grace is ___________.

Grace is determined.

05
Dec 2016
POSTED BY Jenna
POSTED IN

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Support NMO research today on #GivingTuesday

Thursday was Thanksgiving. Then we had Black Friday, followed by Cyber Monday. Today, instead of overeating and overspending in the spirit of gluttony and consumerism, why not donate to a good cause in the spirit of selfless giving?

#GivingTuesday is your chance to make a difference this holiday season. It’s a way to remember how blessed we are by supporting a cause that could benefit from our donations, whether in time or money.

Of course, since this is a blog about Neuromyelitis Optica/NMO, I urge you to support the Guthy Jackson Charitable Foundation this #GivingTuesday. All of the proceeds donated to the GJCF will be used to fund research for treatment and an eventual cure for this debilitating disease that affects all of us here at NMO Diaries.

To support the effort today, please visit the Guthy Jackson Foundation #GivingTuesday page, and be sure to reference #GivingTuesday with your donation.

Thank you from all of us at NMO Diaries, and spread the word!

The Holiday Season is Here!

As I am gearing up for the next few weeks it’s going to be very busy time. First I would like to wish everyone a Happy Thanksgiving! We are traveling to Kansas to see my husband’s family this year for 4 days. This time of the year just seems like chaos for everyone till after New Year’s. As NMO patients this can be challenging for us trying to keep up with everything and trying to take of ourselves. I know for me this time of year is very exhausting and for that I need to thank Starbucks since I will be visiting them everyday till after New Year’s.  Once we get back from Kansas I will be decorating the house for Christmas. I am one of those weird people that put up four Christmas trees because I love Christmas trees! Also it’s that time of the year for Elf on the Shelf to appear and this year we are having another elf joining our elf Buddy I love doing elf on the shelf even though I stress about it too much some times. The look on Allen’s face is just worth it every morning when he is looking for Buddy. The following weekend we are staying downtown for one night and will be watching the Christmas lights parade. Then it will be my 35th birthday which I am absolutely dreading to me that means I am 5 years closer to being 40. I think I will have a hard time with that one well I know I will. I recently watched that movie “This is 40.” Yes I will be like her and will be celebrating my 38th birthday for several years. Four days after my birthday I will be doing my Rituxan which we all know that’s a party in its self. Which means I will not be feeling well for a couple weeks. The next thing on my schedule is my husband’s company Christmas party. Which means Eric and I will be wrapping about twenty gifts for the Christmas party gift raffle. Also squeezing in wrapping all the gifts for the kids and family members. I am hoping I will have time to do Christmas cookies with the kids. Started this tradition with Allen ever since he was a baby. Alana was not into it last year but I think this year she will be more into it. Well at least eating the frosting out of the bowl when I am not looking. Then before I know it will be Christmas. We are staying home this year for Christmas so the kids can enjoy playing with their toys.

Even though it will be a hectic time of the year, I am very thankful for the many blessing in my life such as my family. I think we all can to relate to that when it’s the holiday time we forget what matters the most sometimes.

 

 

Because…SCIENCE!

self-portrait-llcHello again! It’s so hard to believe there’s only a month and a half left of 2016 and then we will be welcoming a new year!

I am still recovering from being so sick over the summer, but am feeling better in terms of energy. I am still in a considerable amount of pain from RA and dreading the idea of having to confront that fact with my Rheumatologist next week. I was told that if the pain didn’t settle, I would likely have to add another medication into the mix. The problem is that the medication in question is an injectable. After having to give myself daily shots for 5 years when I was mis-diagnosed with MS, I am not keen on dealing with constant needles again. The other big deal is that the add-on med is chemo.  I’ve been through chemo before and it’s miserable. The thing is I really can’t go on with the level of pain I am currently in, so we’re going to have to figure this out. I intend to explore my options and see if there’s any way around having to do injections.

In the meantime, I am keeping busy-for the next three weeks I am going to be immersed in medicine from the other side. I am attending a day long MS/NMO ambassador’s annual session out at UBC this weekend. It’s a chance to learn about all the current research the MS Society of Canada is doing and we will also have the opportunity to tour the labs. I am excited about touring the labs because UBC does a lot of important research here in Canada and I know several of the researchers. Getting to peek behind the proverbial curtain will be both fun and interesting.

Next Friday, I am attending an all day meeting for the Association of Registered Nurses of BC’s patient advisory committee. I was invited to serve on this committee a couple months ago and this will be our first chance to meet everyone, set our agenda for the foreseeable future and elect a chairperson. I am looking forward to working will fellow health advocates to improve how healthcare is delivered in our province.

Next weekend is also UBC’s NMO Patient Information Day. It will be good to catch up on the latest in NMO research and clinical trials and to connect with our NMO community. We have a new clinical research coordinator for the CIRCLES study whom I look forward to meeting.

The first week of December, I will be flying out to Toronto at the invitation of the MS Society of Canada to speak to over 100 junior researchers about the importance of MS research. The event is called HEAR MS Day, which stands for Hope and Engagement through Accelerating Research in MS.  I just completed 2 terms as the Community Representative for British Columbia, serving as a lay reviewer for the grants competition and the MS Society of Canada felt my input would be valuable. I am very excited to be a part of this. I will also be attending the 4 day EndMS conference that follows. They are expecting over 250 researchers and health care providers from around the world to attend. There will be scientific presentations, trainee workshops, poster sessions and networking events. I am very much looking forward to contributing and learning.

I have always had a keen interest in medical science. When I was 5 years old, I wanted to be a forensic pathologist, (I know… I was a weird little kid. Clearly, I watched way too many episodes of “Quincy, ME.”) but  I would never in a million years have thought I would be so immersed in the world of medicine, research, education and advocacy the way I am now. I consider myself very right-brained, so all of this really is a departure from my wheelhouse. The thing that hooked me though is the learning-I am never happier than when I am being challenged to learn something new- I will immerse myself and soak up information like a sponge. The other big hook (and to me, the most important one) is the chance to make a difference. Someone I admire very much once said to find the thing you are passionate about and then pursue it with all your might. I am passionate about improving the human condition, especially when it comes to doing everything I can to help advocate for those of us living with NMO and MS. It is an honour and a privilege to be able to serve.

 

Before I sign off, just a quick reminder that UBC’s NMO Patient Information Day is coming up fast. For more information and to register, click here.

14
Nov 2016
POSTED BY Lelainia Lloyd
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Enduring NMO back pain

We all know back pain but for neuromyelitis optica (NMO) patients most of us know it that much more. Ever since my transverse myelitis (TM) attack in 2009 I’ve known serious back pain to be part of my every day existence.

I recently threw out my back with an awkward twist. There was a small pop noise and a shot of pain and then it subsided to something manageable, or at least I thought. Over 2 weeks I took it easy and figured with a little rest it would recover back to my normal. But it didn’t happen and after a few more weeks where it really affected my every day tasks like cooking in the kitchen, sitting at my desk or even walking, I had to ask for help.

I’m currently undergoing physiotherapy treatments for a serious case of sciatica nerve pain and a rotated hip but what else I learned about my body shocked me.

back1back2

back3

In this first x-ray image we found not one but two fused sections of vertebraes in my neck, a genetic defect that unfortunately nothing can be done. But it certainly helps explain my forward head and poor posture, which trickles down to lower back pain to compensate the weight of the head.

In the second image it’s very clear I suffer from scoliosis. There are two types: acquired (from poor habits that can be improved) and genetic (that nothing can be done and that’s evident if the scoliosis is found in the lower spine as well). As it turns out I’m just lazy so I’m needing to re-train myself on how to sit properly and I’ll be taught how to undue my acquired scoliosis. 

In the third image we see my hip rotated (it’s smaller than the other, which is how we can see it isn’t sitting correctly), but we also discovered poor spacing between my vertebraes. The gaps between vertebraes should increase the further we go down the back but mine does the opposite. The disc that cushion impacts have also diminished. No one knows why my spine looks like this but at 35 years of age it could be anything from major impact falls, pre-arthritis, poor bone density or in my case repetitive high dose steroids that have deteriorated the quality of my spine. Oh, and it could have something to do with those awkward lesions left over from the TM attack.

As part of the treatment I’m seeing a chiropractor, physiotherapist, athlete specialists, massage therapy, and eventually kinesiology all working with the same clinic, Rosedale Wellness. I’ve been blessed with this incredible team of professionals who are taking a holistic approach to my recover but more importantly my long term sustainable spine health. It hasn’t been easy though. The treatments leave me dazed because my body isn’t familiar with the new posture setting. The sciatica hip pain is relieved temporarily but as I return to life it slowly returns. And the time commitment to good health is something I’ve had to decide I will stick with until the team feels I have enough tools and recovery; As a mom and entrepreneur I’ve had to off shift my responsibilities and that’s resulted in late nights as my new norm. 

For NMO patients who think back pain is something that just comes with the package I recommend speaking to qualified specialists because it might not be the case for you, just like it is starting to be for me.

Why I love Apple technology

**This post was originally published on my blog on October 28, 2016.

This video shows Sady, a woman with cerebral palsy, using Apple technology to edit videos. What’s mind-blowing is the video was actually edited by Sady herself using the very same assistive technology.

Last Wednesday, Apple announced the launch of their redesigned Apple accessibility website, which now includes videos showing how people of all ability levels use Apple technology to achieve vocational goals and do everyday tasks. These videos not only empower people living with disabilities, they also challenge everyone to rethink what a person can and cannot do regardless of abilities.

As you know, I’ve been a longtime Apple fan, and following my TEDx talk about the importance of inclusivity, I’m ecstatic that Apple continues to make universal design a priority.

Thank you, Apple, for keeping the bar high and being a pioneer for adaptive technology!

Signed,

An Apple Fangirl

P.S. In keeping with their mission, here’s an audio-described version of the above video.

https://www.youtube.com/watch?v=gL2Dh4_F2-M

01
Nov 2016
POSTED BY Christine
DISCUSSION No Comments
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Washington D.C and Dr.Levy

Two weeks ago I had an Appointment with Dr. Michael Levy at John Hopkins. Since Eric and I were traveling all the way from Colorado we decided to Make a long weekend trip and see some of the Monuments in Washington D.C. It was my first time to the east coast and it has been over 10 years since Eric was there. We decided it would be best to leave the kids at home and enjoy a couple’s getaway.

 

Our flight left late Wednesday night and we flew into Dulles we arrived at 11:30 p.m. Time we got the rental car and drove to the hotel which was in Old town Alexandria in Virginia. It was 1:00 a.m. so we were exhausted. Thursday morning we slept in little and woke up and explored Old town for a while and had breakfast before heading into D.C. We decided to take the metro train into D.C so we didn’t have to worry about parking and traffic. We got off the train at the National Archives and walked through the National Mall heading to the Washington Monument. I couldn’t believe all the museums at the National Mall. You could spend weeks going through all the Smithsonian Malls and other museums. As we approached the Washington Memorial it was just incredible how tall it was and all the different people from around the world was just staring up to the top of it.

 

Next we walked down to the World War II monument that was very beautiful to see and peaceful. As we headed to the Lincoln memorial we walked right along the reflecting pool. Which is way bigger in person then what you see on TV. When we were at the bottom of the Lincoln memorial I was thinking how am I going to climb all these steps since my NMO Symptoms are starting to hurt from walking so much? I have been walking a ton and I didn’t want to burn myself out since we still want to go see the Vietnam Wall and the White House. When I slowly climbed the stairs to the Lincoln monument and reached the top it was just gorgeous to see! It was remarkable to see how big it is and seeing it on T.V is just not the same. The Lincoln memorial was my favorite memorial to see by far. Once we were done looking at it and reading all the stuff from Lincoln we sat on top of the steps and people watched. I just could not get over how many foreigners where there looking at our American History. The sad part that there were not very many Americans there looking at our history. I had to rest for little bit before we started to walk down all the steps.

 

The next memorial we looked at was the Vietnam wall that was very humbling to see. Just seeing all the names and all the flowers and gifts people leave there at the wall. After that we caught a cab to head over to the White house since I was getting worn down. It was kind of crazy getting out of the cab and having to walk to get close to the White House. Since you can longer drive on the street in front of the white house and the back of the white house. The have barricades up so you can’t even get close to the fence that surrounds the house. The secret Service guys are very on point and can be a little rude and kind of jumpy with people. We simply just walked all around the White house then I had to take a rest on the Southside of the lawn. So we could walk even more to get back to the train station and head back to Old Town. When we arrived back to Old Town we ate at a great Oyster bar called Hank’s Oyster’s I highly recommend checking it out if you are ever in that area. By time dinner was over we were wiped out and ready for bed since we had a 45-minute drive to Johns Hopkins in the morning and I needed to be there at 9:30 a.m.

 

Friday morning bright and early with a Starbucks in my hand we headed off to Baltimore to John Hopkins to see Dr. Levy. Eric was worried that traffic would be very bad and would take awhile to get there. We made good timing arriving at 9:00a.m. I have always enjoyed Dr.Levy I have seen and listen to him speak at Guthy Jackson Patient Day for seven years. I have always wanted to fly out and go see him and I was thrilled I got that opportunity, Dr. Levy and I spent a over an hour going through my NMO history and what issues I would like to address. He would like to switch some medications around and do some blood tests and follow up in a few weeks. Since I have been diagnosed for 8 years there was a lot of information that needs to be talked about. Plus he wants to look at my MRI’s when I was first diagnosed to my latest MRI’S to see how my lesions are doing.

 

After leaving the Hospital we drove around Baltimore a little bit then we went to a crab place that had really good reviews for crab. Eric wanted crabs right out of the bucket. Like when he lived in Virginia Beach. So that was a nice lunch. We decided to take a scenic route back to D.C I wanted to check out Georgetown. LOL it seemed like a good idea but it kind of a pain but we made it to Georgetown the next tricky part was finding parking. It took us awhile but Eric got it done. I wanted to go shopping and stop at my favorite cupcake store Sprinkles! If anyone really knows me I am very addictive to these cupcakes. If I am visiting a city and they have Sprinkle store I will be most defiantly will be stopping by and buying cupcakes. After shopping for a while we headed back to the hotel and rested for a bit and went to a late dinner at a fabulous Southern food restaurant called Hen’s Quarters. It was the best-fried chicken I have had in a long time. We took a nice stroll down King Street after dinner and headed back to hotel cause we were pretty beat.

 

Saturday was a very special day we decided to spend the day at Arlington Cemetery. I wanted to see the tomb of the unknown solider and the changing of the guard. But also were the Kennedy’s are buried. Also I wanted to spend our last day at a place that was not going to be too crowded with people and was going to be not so noisy and just spend a quite day getting ready to go back to reality. I loved watching the changing of the guard and over all seeing the cemetery and seeing where JFK is buried. We spent about 4 hours walking around the cemetery. We headed back to hotel around 3 and went to a local bar and had a few drinks and went shopping a little bit then off to Hank Oyster Bar again because they had the best crab cake we found during our vacation. We enjoyed our last romantic dinner. Since we had an early flight on Sunday Morning.

Now that I am back home I am still waiting to hear back about the blood tests and on Friday I have an Appointment with my neurologist about what Dr.Levy said and the new medications I Need to try. So I will keep you all posted!

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

img_7027 img_6980 img_6929 img_6910 img_6893 img_6862img_0152 img_6848img_6859 img_6844 img_6831 img_6828 img_6817img_6787  img_6765 img_6764 erin-at-lincoln-monument erin-at-washington-monument

 

 

 

 

 

5th Annual UBC NMO Patient Day

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We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO.

Date: Saturday, November 26th, 2016.

Time: 10:00 AM – 3:00 PM PST.

Location: the Djavad Mowafaghian Centre for Brain Health located at 2215 Wesbrook Mall, adjacent to UBC Hospital along Wesbrook Mall on the UBC Point Grey campus.

Lunch will be provided (gluten-free and non-gluten-free options). Please register attendance and lunch preference here.

Learning Outcomes of NMO Day:

  • Today’s NMO overview: Introduction to NMO, Diagnosis and Symptoms, Treatment Options
  • New NMO research: What is being done worldwide and here in BC
  • How can you get involved
  • UBC NMO Clinic/Research Program: Update and vision for the future

 

24
Oct 2016
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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Thanksgiving Weekend

Totem detail (MOA)

Totem detail (MOA)

Happy autumn everyone! Here in Canada, we’re on the last day of our Thanksgiving weekend. Mine started out Friday morning with an early morning field trip to the University of British Columbia’s Museum of Anthropology (MOA). Visiting this particular museum has been on my life list for ages and I finally had the opportunity to see it thanks to an amazing local group I belong to called Creative Mornings Vancouver. This month, they arranged for members to attend one of two tours before the museum opened for the day. One was about the tools the MOA uses to preserve and treat the pieces in their collection and the other was learning about the stories behind some of the pieces that were created to provoke social change. The day began with a lovely breakfast of pastries and tea and coffee and after the guided tours, we were able to enjoy the rest of the museum at our leisure.

Totem in the great hall. (MOA)

Totem in the great hall. (MOA)

MOA is home to an impressive collection of Canada’s First Nations’ art, but also exhibits indigenous art from other parts of the world. The size and diversity of what’s on display is almost too much to take in in a single visit. My favourite part of the museum is the great hall. The totems and other large scale pieces housed there are incredible. The outer wall of the hall is floor to ceiling glass, giving the illusion of being outdoors. The natural light in the hall really shows off the beauty of the wood and the colours used in the totems. It’s been 3 days since I was there and I am STILL absorbing everything I saw. As an artist, it was incredibly inspiring.

Haida Bear by Bill Reid (MOA)

Haida Bear by Bill Reid (MOA)

Sunday, we had friends and family over for turkey dinner. I always do our Thanksgiving on the Sunday so Monday we can coast on leftovers and relax before everyone has to go back to work. I was a bit apprehensive about hosting the dinner this year because I have really been struggling with my heath and especially with pain from RA. I don’t know what I was worried about though-every time I asked someone for help with something, they were great about jumping in. My son set the table, my best friend carved the bird, my husband and son took care of all the dishes afterwards (we don’t have a dishwasher) and somehow managed to get all the leftovers to fit in our fridge. (It’s like Tetris in there, but hey, whatever works!)

Today, I am relaxing and feeling grateful for such a great weekend. It’s good to be reminded that there is beauty in the world and to be surrounded by the people I adore.

Happy Thanksgiving to my fellow Canadians! I hope your weekend was full of good memories, great food and time with those you love.

10
Oct 2016
POSTED BY Lelainia Lloyd
POSTED IN

Everyday life, Family, Food

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Recap of my recent trip to Canada

Christine Ha and Carl Heinrich, hosts of Four Senses on AMI

Processed with VSCOWith my co-host, Carl Heinrich, owner of Richmond Station in Toronto and season 2 winner of Top Chef Canada

I was in Canada the second half of September filming the fourth season of my accessible cooking show, Four Senses. TV is much less glamorous than one would think: I get picked up around 6:45 AM every morning. We film two episodes a day, which has me on my feet for most of it, while trying to be energetic, making conversation with our guests, cooking, and then throwing scripted lines to camera. Because I’m vision impaired, I have to memorize my throws and try to find the camera with my eyes at the same time. This was what I did for seven days straight, as we filmed our entire 13-episode season in 7 days. Then after we wrap each day, I have a meeting with our director, producer, and my co-host to go over the next day’s scripts. Then I grab a quick bite and then study the next day’s scripts and guest bios until I finally get to bed around 11 or midnight. Then I wake up before sunrise and do it all over again.

All that said, being part of the industry has given me a new appreciation for the efforts that go into making a TV show. production is definitely labor intensive, and it takes a strong, hardworking team with everyone doing their job to pull it off. A production is only as strong as its weakest link. This season, our team consisted of 23 cast and crew.

What I like about television is the challenges it’s posed. TV really forced me out of my comfort zone—I’m an introvert and not naturally great on camera—and it’s gratifying to work hard together and know we’re doing something that helps others. In our case, it’s making educational entertainment that challenges those who are vision impaired to regain independence by returning to the kitchen.

I had a few days off in between my field shoots and studio run, so I got to see Jenna, her husband Mike, and their daughter Sophie. It was a rainy day, but we managed to grab lunch and some drinks at Mill St. Brewing before I attempted to hit hockey pucks in the downpour. (It was the hockey World Cup, and Toronto’s Distillery District had been transformed into a cocky village complete with carnival stations..)

The rest of our afternoon was spent traversing the mall downtown. My hubs, John, bought a Blue Jays hat, and Jenna and I combed Aritzia while our men discussed with disbelief about how long women can take in a single store.

As always, Jenna and I talked about the goings-on in our lives, how we’re doing with the Neuromyelitis Optica/NMO, and then made sarcastic remarks about everything else. It’s nice to hang out with people who get our illness but whom don’t make it the center of conversation. We may have NMO, but NMO doesn’t always need to have us.

Overall, I had a good experience in Canada (with the exception of some piss-pour service from Air Canada, but I’ll save that for another time). I’ll end this recap with a few notable observations which, I hope, you’ll find amusing more than anything.

What I learned about Canada, Canadians, and Toronto in 2016

  1. Bears are a common sighting during the fall season. Apparently they’re searching for food to fatten themselves up before winter hibernation.
  2. People who live in Toronto are called Torontonians. Despite what I, a Houstonian, might have thought, Torontonians do not eat poutin every day. In fact, they only ingest it late at night after many drinks.
  3. Torontonians really love their Blue Jays. Unfortunately, I was told Toronto now holds the record for North American city with the longest streak without any sports championships. (The former record holder was Cleveland, but the Cavaliers had changed that.)
  4. Three Canadian snacks you should try are ketchup chips, all dressed chips, and coffee crisps.
  5. Many Canadians are wary of Texans. (Believe me when I say not all Texans open-carry guns and support Trump.)
  6. Whenever they find out I’m American, almost every Canadian without fail brings up Trump. Please know I’d much rather talk about Netflix shows, dogs, and poutin.
  7. September is a great time to be in Toronto because the weather is amazing. Get your breezy, sunny days now before the harsh winter sets in.
  8. Toronto has great food. You can get fine dining, French, Caribbean, Japanese, Chinese, Spanish, and American all within a few city blocks.

Till next time, Canada…xoxo!

P.S. Here’s an interview I did with CBC Toronto’s Dwight Drummond about Four Senses.

Four Senses season 4 cast and crew

It takes a village to make a TV show.