The dog days of summer

The dog days of summer are over…well, almost. With just a few weeks before our little girl starts pre-kindergarten, I start the busy hiring season at work and the husband will likely be swamped covering our Federal election, I wanted to make sure we spent some good quality time together.

We’ve had so much fun together as a family unit but vacation season can certainly take a toll when one lives with a challenging autoimmune disease like neuromyelitis optica (NMO). Eating all the bad foods (this year I dubbed it the “butter tart tour”), staying up late, neglecting to exercise and drinking a lot of wine can cause havoc on the immune system. And the heat…the endless hours outdoors makes my nerves scream in pain.

But I refuse to let this disease dictate how I live my life. We’ve kept ourselves so busy it’s tough to remember everything we did but here’s an excerpt of our adventures:

-We spent almost 2 full weeks and a few weekends at the family cottage, swimming in the lake and at the beach, hiking, touring a cranberry bog/winery, and enjoying the outdoors with fires and s’mores.
-My best friend Andrea and I took Sophie to the Art Gallery of Ontario where we participated in clay play.
-The PanAm Games were hosted by our home town of Toronto. We attended aquatic diving and a bunch of free music events.
-My husband’s distant relatives visited from Norway so we spent a weekend acting like tourists in our own city, visiting the CN Tower, the markets and sailing Lake Ontario.
-We visited The Toronto Zoo (we love the pandas) and African Lion Safari (a game reserve).
-We biked long trails, golfed and took up running again.
-We attended a few street festivals like the Night Asian Market.
-We enjoyed the outdoor pools, splash pads and Centre Island, which is home of Centreville Amusement Park.
-Our Toronto Blue Jays have done well this year so we attended a few games already.
-Remember drive-in theatres? We piled the trunk of our car with pillows and watched Minions.
-And we’ve had a lot of ice cream. We love peanut butter chocolate anything.

We hope you’ve enjoyed your summer to the fullest. Next week we’ll be posting our favourite summer pictures. Best of health to each of you.

25
Aug 2015
POSTED BY Jenna
POSTED IN

Just for fun, NMO

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It’s The Little Things

To say that this summer is not going smoothly, would be an understatement. On June 25th, I got a call that no one ever wants to get: my husband had suffered a major heart attack at work. He was rushed first to a nearby hospital and then transferred by ambulance, with lights flashing and sirens screaming to our local trauma hospital for emergency surgery that would save his life.

Two weeks later, his complained of seeing “spider legs” in his left eye. An urgent appointment with an eye surgeon reveled his retina had torn and he had a sizeable hemorrhage, rendering him blind in the left eye. He underwent another emergency surgery, this time to save his eyesight right there in the office while I held his hand. Two weeks passed and the hemorrhage had not even begun to clear, so he had a second surgery on Friday to remove the blood so his eye can start to heal.

All of this has been traumatic and stressful on so many levels. Usually, I am able to take things in stride, but this was a heck of alot to deal with all at once, especially since I’ve had two rounds of IV steroids since the beginning of June and have not been feeling well myself.

On one particularly bad day, I called my best friend and had a bit of a meltdown. (I blame the steroids!) Sometimes it’s okay to not be okay and it’s a blessing to have someone in my life who really understands that. Later that day, I was tooling around online and came across a shirt that perfectly illustrated how I was feeling at that moment. My best friend saw it and ordered it for me, saying I had earned it.

This is it:

nope

 

I love it. Sometimes life is hard. Sometimes it runs you over. Sometimes you just have to take a break and say NOPE. It’s a good reminder that sometimes coping with the hard stuff means having moments like this and giving yourself permission to feel how you’re feeling. I am working on this. Meanwhile, I will wear this shirt and keep taking things one day at a time. It’s the little things that help me cope.

17
Aug 2015
POSTED BY Lelainia Lloyd
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Getting back to the regular schedule program

At the beginning of July I got news from my neurologist my CD 19 count is not absolute anymore and I need to schedule my Rituxan. I was really hoping to make it to September to breastfeed Alana but I had to give it up when I had to do Rituxan. I do feel very lucky I have gone over a year since I had my last Rituxan infusion. Since it has been that long I had to two different rounds two weeks apart. So I had the fun battle of drying up my milk and the aftermath of Rituxan. I had people come and help me with the kids for several days so I could recover. I was not hard on myself about not being able to breastfeed anymore since I struggled with producing enough milk for Alana. Also had to look at it as I would rather get treatment and be here for my children rather risking having a horrible attack.

Now that I am done doing my Rituxan I am back on my strict diet staying away from foods that cause inflammation in my body and eating healthier. Also started working out with my personal trainer three times a week. It is so hard getting back into the program of eating healthy and working out. I have a goal of losing 50 more pounds in the next several months. I know I can do it, I really need to focus and dedicate myself to the diet and workout sessions. I lost over 60 pounds before I became pregnant with Alana so I know I can do it! I think the hardest part is the diet and staying away from all the sweet stuff, dairy, and gluten. I forgot how many things have gluten and dairy in it. Eric grew a garden this year so right now we are getting a lot of homegrown vegetables. It is so fun to take Allen down to the garden to pick vegetables. I will keep everyone posted how I am doing back on the program.

I want to stay healthy as much as I can for my kids. With two kids to take care and taking care the household work it is sometimes very overwhelming. I always ask myself “ How do people have more then two kids?” It is pure chaos at my house sometimes with two kids needing my help. I am working really hard to get the kids on the same nap schedule so I can have some time to myself and try to get more things done. So far I am not having any luck. Allen is getting to that stage where he does not want to take naps anymore and Alana only takes a really good nap in the morning and then cat naps in the afternoon.

I have also learned with two kids I can only run about 3 errands maximum before one of my kid’s starts having a complete meltdown. The days seem to fly by for the most part since I am so busy. I am so fortunate to be able to stay home with my kids and watch them grow everyday and How Allen is really starting to love his sister and loves to play with her. Watching my kid’s interact with each other is so much fun! It really melts my heart when Allen tells his sister he loves her and gives her a kiss. Alana really loves her brother she laughs at him all the time and just will watch him across the room. I hope they have a close relationship. I just love my family and we are enjoying our summer with each other!

11
Aug 2015
POSTED BY Erin
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Advocacy Update

Profile

 

Last month, I got a surprise email that the MS Society of Canada was featuring me in their MS Research in Action newsletter. What was really great about this was that they also included a link to the advocacy video from the NMO Patient Day in Los Angeles which took place in early March this year. This publication goes out across Canada, so it was an amazing opportunity to bring awareness to NMO. If you’re interested in reading the full article, along with the rest of the publication, it’s here.

I am a Community Representative for British Columbia. What this means is that I am a part of the medical grants review committee. Last year, I reviewed 24 of 96 Personnel grants. This was the first time anyone living with NMO was at the table. I was incredibly happy to be participating as a member if the NMO community and advocating for those living with MS and allied diseases. I was extremely honoured to have been asked to serve a second term. Reviews will begin in late November and I will be flying out to Toronto for the review meeting mid-January. I am excited to dive into the work. If you’d like to know more about this process, you can find it, along with my profile here. Click on where it says “Full interview” underneath my profile.

In the meantime, I have been doing some consulting on various medical projects as well. It’s been really great to be invited to give my feedback and to have a small hand in shaping the outcome. In finding ways to use my strengths and skills to support the work the Canadian MS Society and the Guthy-Jackson Charitable Foundation are doing, I am fighting back against these terrible diseases. We all have a part to play, whether it be by raising important research dollars, raising awareness, advocating for better treatments or participating in clinical trials. The truth is, as patients, we are powerful beyond measure and the best way to know what’s going on is to be a part of it.

That said, I want to thank everyone who took a moment to share their thoughts about the new NMO Patient Card that I posted about last month. I hope that it will be helpful for those who will use it here in British Columbia. Perhaps over time, other NMO centres can adopt the idea and adapt it to reflect their clinic’s contact information. My fingers are crossed!  If you believe it’s something your clinic should have, I strongly encourage you to have that conversation with your local researchers and clinicians. That’s how this whole thing came to be in the first place-it began as an idea, which was then shared in conversation. Our care teams can’t help us if they don’t know what our needs are. It’s up to us to communicate with them.

03
Aug 2015
POSTED BY Lelainia Lloyd
DISCUSSION No Comments

Despite NMO I have a 3 year old now!

 

 

 

This past weekend we celebrated Sophie’s 3rd birthday and yes, it was elaborate. In truth, I know I can get, um, well, a little overboard but I can explain.

 

Sophie’s birthday is technically the end of this month but as a “long weekend baby”, we’ll probably always celebrate it a week early with our family and friends. On her actual birthday we reserve the day for just the three of us as a family unit.

 

Sophie, like all other children, is a miracle. But to me, her day is very symbolic and extra special. Living with NMO (neuromyelitis optica) I was told having children was not going to happen. They said it was dangerous to come off my meds, reckless, not enough medical evidence, etc. To Mike and I, that was just more heartbreaking news. But I worked hard to get back to an acceptable health. And I did my homework about IVF. Then I begged and pleaded my team of doctors until they agreed, with significant warning, to let us give it a try.

 

And then there was the entire IVF process…that’s a whole other post.

 

But in the end, we beat this disease just a little bit because we have her, our miracle baby. And every year on her birthday I’m reminded of how grateful I was and still am for all the love and support from our family and friends and doctors and medical advancements, and (I can go on and on – this is such a long list).

 

And my heart breaks just a little bit more when I think of how NMO might rob me of time with her. This month has been tough knowing we’ve lost one of our big advocates, Candace Coffee, and how her twins are just a year younger than my little girl.

 

So yes, I throw a party. I take months ahead of time to plan intricate details around her theme (this year it was “Princess”) and we celebrate. For this I won’t apologize, be judged or scolded.

 

And as I watched her have an amazing time with her new school friends, dance class friends and family friends, my heart is filled with more happiness than I could have ever imagined. We beat NMO a little bit yesterday, today and if I have anything to say about it, for a really long time tomorrow too.

The royal princess table setting for 12 kids.

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A special guest, Rapunzel, surprised the birthday girl with a visit.
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It wouldn’t be a party without a royal snack table.

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Hummus carriage (with zebras because we couldn’t find small horses).
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Glam station for when the royal guests arrived.
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And special cupcakes with ring toppers that each guest brought home. 11745600_10153490885309461_5620079337406472899_n

The bouncy “castle” was a real hit. cwvDm9asA3Lw9ZNWAbl5esWzZw-1

Her royal highness, Princess Sophie, is now 3 years old.11753743_10152960304720824_6670494545840344038_n DSC07119 DSC06976

The first annual Dining for NMO Day is set for Oct. 19th

I’m pleased to announce the first annual Dining for NMO Day taking place Monday, October 19, 2015!

What is Dining for NMO?

Dining for NMO is a cause spearheaded by Gabriela Romanow, whose 21-year-old son was diagnosed with Neuromyelitis Optica/NMO last year, and is backed by the Guthy Jackson Charitable Foundation and myself. For one day only, on October 19th, we are asking restaurants to support our cause by giving a monetary donation to the Guthy Jackson Foundation, and for everyone in the extended NMO community—patients and their friends and families—to dine on that very day at one or more of the participating restaurants.

All the proceeds from Dining for NMO will be donated to the Guthy Jackson Foundation, where 100% of it will go to scientific and clinical research to help find a cure for NMO.

How did Dining for NMO start?

Ever since Gabriela’s son, Max, was diagnosed with NMO in 2014, she has made it her personal mission to help find a cure. She contacted me several months ago and asked if I would be willing to help raise awareness and funds for the GJCF. I’ve long been involved with the GJCF, even before I was on MasterChef, as I’ve attended several of their Patient Days (that was where I met Erin and Jenna, and when NMO Diaries was born). I’ve spoken at one of the Patient Days and have helped raise awareness for NMO together with Victoria Jackson; her husband Bill Guthy; and their daughter, Ali, who also suffers from NMO. During the summer my season of MasterChef was being broadcasted across the U.S., my husband, john, and I ran a grassroots fundraising campaign selling #teamchristine tee shirts, and we donated all the monies to the GJCF.

Because I’ve been a longtime friend to the GJCF, and because I’ve been put in a position, thanks to MasterChef, where I can effectively advocate for causes like NMO, I accepted Gabriela’s invitation to join the Dining for NMO advocacy team.

It wasn’t until after I got involved that the Dining for NMO theme and campaign came into fruition. Dining for NMO combines two things about which I feel passionately: bettering the world in which we live and, of course, eating! Since NMO is what caused my permanent vision loss, I have an especially personal tie to this cause.

Our first ever Dining for NMO Day is a huge undertaking, but if I’ve learned anything from my experience on MasterChef, you need to give it your all, no matter what the obstacles. And that goes for all of us living with NMO.

How do you get involved?

The success of our first annual Dining for NMO Day depends on YOU. Please support the cause and help us find a cure. Please ask a restaurant to participate. If you, your sister, your boss, your best friend, or your aunt’s friend’s father owns a restaurant, ask them to support by making a contribution to the GJCF on Monday, October 19th. In exchange, offer to fill that restaurant with diners on that day. In doing so, everyone wins!

To learn more about how you can get involved, visit the Dining for NMO website and share with everyone you know. Every little bit counts.

On behalf of the GJCF, Gabriela, and Max, we thank you. xoxo

21
Jul 2015
POSTED BY Christine
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Candace Coffee May you in RIP

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Our NMO family is grieving today,as we lost another family member Candace Coffee. I remember when I was first diagnosed Candace and Collin were the first videos I watched of other people having NMO. Sure was very active in spreading awareness for NMO and loved her twin boys so very much! Below is a video about Candace also a link to her Gofundme account that they have setup for a college fund. Please if you can please donate! RIP Candace.

http://www.gofundme.com/yzt34w

 

An Idea Whose Time Has Come

At the beginning of 2015, Researchers, Clinicians and NMO Patients gathered informally for a few hours at the University of British Columbia to have a round table discussion about whatever was on our minds. It was a really great opportunity for all parties to meet, ask questions and get answers.

During the discussion, I shared an idea I had about creating a wallet card for NMO patients. I thought it would be helpful to have something we could present to medical staff in the event that we had a relapse and had to make an emergency trip to an ER. My thinking was that if the card detailed what NMO was and what the standard of care was, it would help reduce confusion for medical staff not familiar with NMO and aid in facilitating the proper treatment protocol in a timely manner.

The response to this idea was immediate. Katrina McMullen and Julia Schubert, both of whom work with the NMO clinic and research program got right to work to make this happen.  Julia did a beautiful job designing the wallet card and Dr. Rob Curruthers and Dr. Tony Traboulsee provided the medical content.

This is what the front looks like:

front

(Click to view larger)

If you scan the QR code at the top right, it gives you access to a PDF which has more information on NMO and treatment options.

This is what’s on the back:

back

(Click to view larger)

It includes an explanation of what NMO is, the standard treatment protocol for attacks and several contact numbers for the UBC MS/NMO clinic.

NMO patients in British Columbia can request cards from by emailing NMO Clinic and Research Program manager, Katrina McMullen, (katrina.mcmullen@ubc.ca) or they can ask for the cards while at the UBC clinic for a doctor’s appointment or research visit.  Katrina and Julia welcome any feedback or requests as they hope to continue to develop programs to meet patient’s needs in the BC.

So…there you have it! An idea whose time has come! I am so proud of the team at UBC for investing in this idea and executing it so incredibly well in such a short period of time. Our collective hope is that this will help make a difference in the lives of NMO patients. This initiative underscores the importance of team work when it comes to advocating for NMO awareness. A heartfelt THANK YOU to everyone involved & congratulations on a job well done!

06
Jul 2015
POSTED BY Lelainia Lloyd
DISCUSSION 22 Comments
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Visual Cues

Like most little kids, my daughter loves to play in my closet. When left to her own devices, Sophie can be found putting her tiny feet into my high heels, dragging my scarves through her bedroom and dressing her dolls in my t-shirts. Last week she emerged with my cane, which was buried deep at the back of my walk-in closet, and I instantly cringed. Although it was 5 years ago, the mere sight of the walking aid brought me back to my most vulnerable time.

I’m one of the lucky ones and that’s a weird thing to say because neuromyeltis optica (NMO) doesn’t go away. There was a time I was told I’d probably never walk again, and then that I’d probably never walk properly again, and then that I got lucky…this time. It’s the “this time” part that made me stash the cane at the back of my closet. I’m a realist now and I’ve made my peace with the inevitable that one day I’ll need the cane once more, but I’ve been quite content, thank you very much, to move on with my life in ignorant bliss. Out of sight, out of mind until my pre-schooler decided it would make an excellent toy for the afternoon.

I know a lot of NMO patients can relate to how their wardrobe makes them feel. When on prednisone (steroids) most of us gain weight, and some of us even get the ‘moon face’. On one particular outing a stranger asked me when I was due and I lied and said, “soon” to avoid the uncomfortable truth. I remember coming home, grabbing several garbage bags and donating all of my thin clothes. Hundreds, if not thousands, of dollars worth of clothing, were given away that day. And although I’ve now endured several rounds of prednisone I’m more at peace with my wardrobe that “this too will pass” and subsequently divide my closet into “skinny Jenna” clothes and “Jenna-zilla” clothes.

It’s funny how a phrase, a song, the sight of an object can instantly bring us back to a moment in our lives.

01
Jul 2015
POSTED BY Jenna
POSTED IN

Uncategorized

DISCUSSION 4 Comments
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NMO TV

We hope you’re all enjoying the warmer weather and if not, do what you need to stay cool and keep symptoms away. If you’re staying indoors, now is the time to take a look at Guthy-Jackson’s new NMO TV here:

 

http://www.guthyjacksonfoundation.org/nmo-tv/

 

Happy summer!

23
Jun 2015
POSTED BY Jenna
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