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
DISCUSSION No Comments
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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
TAGS

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
DISCUSSION No Comments
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Guide Dogs for the Blind: Should I get one?

In my latest Blind Life episode, I visit Guide Dogs for the Blind in San Rafael, California, where adorable puppies are born, raised, trained, and matched with visually impaired human partners. Erin, Jenna, Lelainia, and I all have canine companions, but all of ours are pets and not service dogs. I’m the one with the most impaired vision, and yes, I’ve considered getting a guide dog. This is why, when invited to the GDB to both visit and host an intimate, private dinner to help raise funds for the program, I jumped at the opportunity. I wanted to know, what’s it like to work with a guide dog?

Here are some things to consider when it comes to guide dogs:


  1. How often will I need the aid of a guide dog? That is, how often will I leave my home on my own? Guide dogs are energetic and eager to work, so your lifestyle and schedule should get you out of the house often. Use it or lose it, you know? Currently, I work mostly from home with the occasional sporadic travel. There are times, though, where I rarely leave the house during the week. When I was in grad school, I went to campus a few times a week, so having a guide dog then would’ve made more sense than it does now.
  2. Am I a dog person? This question might be a catch-22: you may not be a dog person, and then once you get a guide dog, you may become one. It’s a no-brainer if you love dogs, but even if you don’t, are you open to them? These guide dogs will be your companion until death do you part—are you ready for that sort of union? If you’re allergic to dog hair, I believe there’s a niche program out there providing hypoallergenic dogs. This population (blind individuals who want a guide dog but who are allergic) is so small, though, that it may be hard to get placed with a furry companion. You might have to consider alternatives (seeing eye bird anyone? Just kidding).
  3. Am I willing to put in the effort to be trained myself? I used to think getting a guide dog meant I applied for one, and then a cute, intelligent puppy would show up on my doorstep the next week. Wrong! We humans need to be trained, too. Your dog will not automatically know how to get to the Gap as soon as you get dropped off at the mall (unless, of course, you work at the Gap and have taught Fido the route from bus stop to storefront before). Guide Dogs for the Blind invite their new consumers to their campus in California to meet their new guide dogs and spend a couple of weeks doing “in-house” training. This means living short-term on campus with your dog, building trust between the two of you, and acquiring the skill set to work with the dog (I.e. How to care for her, how to teach him new routes, how to give positive reinforcement, etc.). You’ll have to take a short break from your daily life to come learn: are you willing to leave your family, work, and the comforts of your own home for a little while? Moreover, are you willing to put in the effort to become the best owner you can be? These dogs, their instructors, and their caregivers have put a lot of work into getting the pups ready for you. It’s your turn to uphold your end of the deal.

I’ve never had a guide dog myself, but maybe one day, I will. Guide dogs offer safety, protection, and companionship. Their intelligence and loyalty blow my mind: just take a look at this recent story about a guide dog putting itself in between its owner and a bus to protect her.

15
Jun 2015
POSTED BY Christine
DISCUSSION No Comments
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Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

All In

 

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NMO family, Rocky Point, BC, Canada. May 2012.

So…it started with excruciating pain in my left index finger. I’d inadvertently bump my finger and a lightning bolt of pain would shoot right through it, leaving me on the verge of wanting to vomit. I couldn’t bend my finger to make a fist. Then I developed pain in my left thumb on the crease in the palm of my hand. It hurt to try and fold my thumb towards the palm. Eventually, the pain made it impossible to grasp and carry something as simple as a coffee mug. This might not have been such a big deal if I were right handed, but as someone who is ambidextrous, there are certain tasks my left hand does, not to mention I’m an artist who works with her hands. It’s been both painful and frustrating.

I was cooking pancakes one morning and suddenly the room tilted at a 45 degree angle. WOAH! That’s not right. It stayed that way for a good 5 minutes, so I hung onto the counter and kept cooking while I waited it out. When it was over, I mentioned it to my husband. I have had several episodes of what I like to refer to as “drunken sailor” since then. Fun times!

Now my left leg has developed pins and needles. I was adaptive dragon boating the other day and when it came time to get out of the boat, I couldn’t stand up. I ended up kneeling on the dock till I could wake my leg up enough to finally stand up. Since then, I am walking stiff legged. I’ve lost power in that leg and there are times where I feel unsteady on my feet and disoriented. My proprioception (knowing where my body is in space) seems to have gotten worse. Last Wednesday, my physiatrist (a rehabilitation physician who is a nerve, muscle and bone expert who treats injuries or illnesses that affect how you move) absolutely insisted I get a cane. I was not ready for that. Not by a long shot.

This is just a small snapshot of what goes on in the life of someone living with NMO. This rare disease manifests is so many ways, all of them devastating and destructive. Every day we deal with the fall out of our bodies betraying us. Every day is a battle most people know nothing about.

This Sunday is the third annual NMO 5 km walk/run/roll at Rocky Point in beautiful Port Moody, British Columbia Canada. It’s the only event like this in the world, dedicated specifically to NMO. I will be there, along with my fellow NMOers, allies and local researchers and clinicians raising money and awareness for this terrible, relentless disease.

If you can, please come join us-it’s not too late! We would deeply appreciate your presence. It gives us strength to know we are not alone. If you are unable to be there in person, please consider participating as a virtual participant. Nancy, our walk founder and NMO mum will write your name on her shirt and you will be with us in spirit. You can also choose to make a donation-every single dollar will make a difference. Click here to donate directly to the UBC/VGH Hospital Foundation or click here to donate directly to the Guthy-Jackson Charitable Foundation. (You can make a note that it’s for the NMO walk.)

We are all in. Please join us.

01
Jun 2015
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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I have NMO. Now what am I supposed to eat?

If you’re like me you probably enjoy the occasional over-indulgence of food and usually the bad stuff. Growing up Dutch-Indonesian our meals often revolved around rice dishes, cooking oils and spices. I’ll admit that food, especially the quality of food, is usually the last thing on my mind. I’m not a poor eater but I am guilty of sporadic meal times, missing meals and binge eating. Having a child corrects some of my poor habits but as long as she’s eaten well and regularly I’m ok.

Since my NMO diagnosis several years ago I’ve really battled with food. Prednisone made me over-eat and the weight gain pulled me into a dark depression. I lost most of the weight only to pack it all back on when I was pregnant and then lose it all again. Over time I’ve read a lot of studies, testimonials and books on how diet can resist or improve neurological symptoms.

But I was overwhelmed.

It seemed like the more I read the more confused I became. Some argue a vegan diet while others argue gluten-free or soy-free. Scared of falling into a trap of another fad diet, I spoke with my doctors who all said the same thing – “everything in moderation.” A couple of summers ago I challenged myself to go vegetarian for 2 months, really just to force myself how to cook differently. What I found was that my body felt better, cleaner and more capable of handling the NMO symptoms. But I love steak too much…

So here we are at present. After more research and coaching from family members who also struggle with disease I’ve now spent the last month on the Paleo autoimmune protocol (AIP) diet. It’s restrictive, tough and unforgiving. The goal is to rid your body of all possible inflammatory foods then slowly introduce them back into your diet one at a time to identify which ones cause havoc on your body. My cousin best describes the feeling of Paleo AIP – “it is so powerful to use food and find control again of your body after so long”. Now, I’m not saying that I will ever be able to stop my regular meds and that my symptoms all magically went away BUT after the first week I already felt better.

I’ve just started introducing rice into my diet and so far there is a limit before I feel bloated and sick. I’m playing around with portions and I’m hoping that will make rice more tolerable. I don’t know if full on Paleo is my solution or even feasible but I know I’ve made a huge mindset change that will stay with me forever.

My gallery of Pinterest fails:

This is supposed to be the meat patties that provide my protein in the morning. They never turn out looking like perfect circle hamburger patties.

 

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Instead they turned out looking like burnt hockey pucks (but they still tasted really good).

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Desperate for sugar (I went into complete withdrawal after 2 days) I attempted to make beautiful coconut flour pancakes. They tasted horrible, like dry flour and no amount of maple syrup was making these better.

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This wasn’t a fail per se but I did miss potatoes. My family really enjoyed this roast.

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