What to tell our children about NMO?

Despite this blog, I’m a very private person. I go about my day without anyone really knowing the pain I’m in. I rarely (closer to never) complain and most of my family and friends forget that I suffer from Neuromyelitis Optica (NMO). But truthfully, some days aren’t good. On my “bad days” I tend to go into hiding, I work from home, I sadly cancel on social outings. I’m okay with that now. My husband is the closest who gets it (as best as any non-patient could), watching me in quiet agony sometimes and I’m sure overhearing my private pep talks to push through the day. And now my daughter is also privy to my suffering.

So how much do I tell her?

My daughter is 2 and a half now. As a mother I’ll do anything to protect her from the realities of this world. I don’t want her to know pain, sadness, disappointment for as long as I can. She’s growing up so fast and I’m often disgusted how quickly our world wants our children to mature. Don’t get me wrong – I don’t want to raise an ignorant, immature brat, but I do want her to enjoy being a princess, blowing bubbles in her milk and laughing at funny faces we make because she (and every child) deserves that.

On my bad days she’s seen me struggle a little bit. On those days I know a look she has on her face, that is a mix of understanding I’m not my usual energetic self with a lot of worry that something isn’t just right. It’s that look that breaks my heart. It makes me worry about that inevitable day, the one when another major attack happens, because it will, and we’ll have to figure out a way to explain it. I’m not pessimistic but a realist who thinks we should be as best prepared as we can be.

I don’t know if this is the right answer (like all parenting conundrums) but when she’s old enough or when I’m forced to find a way to explain it, I will tell her my harsh reality. And that’s ok because I want her to understand that sometimes bad things happen to good people and strong people can have weaknesses. What I have resolved so far is this – NMO will be my battle, not hers. I hope for a cure one day but if things become more challenging as we both age I’ll want her to go and live her life  and not become my caregiver. I hope I raise her well that she’ll want to be but of course, I won’t let her. I know I’ll potentially get some grief about this; there are a lot of families that believe one should take care of their elderly, and yes, there’s a certain sweetness and sense of responsibility I respect about that value. But I hope for my daughter to be braver than me, stronger, smarter, healthier than me and I want her to take that and be impactful to our world, not just impactful to me. 

16
Dec 2014
POSTED BY Jenna
POSTED IN

Family, NMO, Uncategorized

DISCUSSION 1 Comment

Holiday Baking goodies

Tis the season of baking holiday goodies. I would like to share some of my favorite recipes to bake goodies for family and friends. This year I am trying to bake as much as I can but I might be limited since I am getting to the point in my pregnancy standing on my feet starts to hurt after awhile. Anymore I get a lot of my recipes off the internet for one its quicker and easier. Second I already have a ton of cookbooks and do not need to buy anymore.  I am excited this year to decorate cookies with Allen I think he will have a blast! I am sure he will eat so much frosting it will upset his stomach but at least he will have fun. Happy baking!

Chocolate Chip Cookies

http://allrecipes.com/Recipe/Moms-Chocolate-Chip-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=chocolate%20chip%20cookie&e8=Quick%20Search&event10=1&e7=Home%20Page&soid=sr_results_p1i4

 

Oreo Balls

http://allrecipes.com/Recipe/Oreo-Balls/Detail.aspx?event8=1&prop24=SR_Title&e11=oreo%20balls&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i1

 

Roll out sugar cookie dough

http://allrecipes.com/Recipe/The-Best-Rolled-Sugar-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=roll%20out%20sugar%20cookie%20dough&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i12

Frosting for Sugar Cookies

http://allrecipes.com/Recipe/Sugar-Cookie-Icing/Detail.aspx?event8=1&prop24=SR_Thumb&e11=sugar%20cookie&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i4

 

Molasses Cookies

http://allrecipes.com/Recipe/Molasses-Sugar-Cookies/Detail.aspx?event8=1&prop24=SR_Title&e11=molasses%20cookies&e8=Quick%20Search&event10=1&e7=Recipe%20Search%20Results&soid=sr_results_p1i1

 

No Bake Peanut Butter Cookies

http://allrecipes.com/Recipe/No-Bake-Peanut-Butter-Cookies-III/Detail.aspx?event8=1&prop24=SR_Title&e11=no%20bake%20peanut%20butter%20oatmeal%20cookies&e8=Quick%20Search&event10=1&e7=Recipe&soid=sr_results_p1i16

 

 

09
Dec 2014
POSTED BY Erin
POSTED IN

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Be Well!

Jan10 (C)How has a month flown by so quickly? December already! *boggles*

So I thought this month, I would share some of strategies for staying well during the holiday/cold flu season. This is not medical advice, but rather just tips and tricks I use to avoid coming down with whatever’s going around and to manage fatigue.

Tips on Avoiding Germs:

1. This is probably the most important and involves common sense: I tell friends and family that as long as they are not sick (ie: coughing, sneezing, running a fever) they are welcome in my home. I tend to have to remind people fairly often, but when I do, I do it as nicely as possible. When you are a generally healthy person, you enjoy a different level of awareness about these sorts of things, so it’s easy to forget that it puts someone you love with NMO at risk.

2. When guests leave my house, I remove all the hand towels in my bathroom and put them in the hamper to be washed.  I have been doing this for years. It just made sense to me that if germs are going to come into the house, that’s one way to keep them to a minimum.

3. I have several pairs of those cheap stretchy winter gloves-the ones you can buy at the dollar store. When I have to travel on transit in the winter, which is the height of cold and flu season, I put a pair on. That way I can hang onto the poles getting on and off the busses and Skytrain and hold handrails or push elevator buttons in the stations and I am not exposing myself to any germs. When I get home, I throw the gloves in the wash and put a clean pair in my bag for next time.

4. I try to avoid having to go to the doctor’s office or the hospital over the winter when everyone is hacking and sneezing but if I absolutely must go, then when I get home, I throw all the clothes I wore into the wash and have a shower.

5. Wash your hands, wash your hands, wash your hands!! Sometimes I don’t have access to a washroom, so I carry a packet of antibacterial wet wipes in my bag. I’m not a fan of that hand sanitizer stuff,  so wet wipes are a better option for me.

 

 

Managing Holiday Fatigue:

1. I try to avoid over booking myself. If I have too many activities, not only am I not going to enjoy them, but I will be stressed and tired and probably not much fun to be around. Less is always more.

2. Naps are your friend! Leave some room in your daily activities to have a lie down. Even 10 minutes can help me feel more human, but usually I like to have at least a ½ hour. I don’t necessarily need to sleep, but I do need to stretch out and have some quiet time. This act of self care is super important to my daily routine.

3. Eat well. It’s such a temptation to load up on treats over the holidays, but too much fat and sugar can be an energy drain. Your body needs healthy food more than ever during this busy time of year. Don’t deny yourself the treats, but enjoy them in moderation and aim to get fruits and veggies on your plate too. Your body will thank you for it. I find when I eat poorly, I feel poorly and for me, that’s reason enough to be more thoughtful about my food choices.

4. Delegate! This is one time of year where there are so many services to help make preparing for the holidays easier.  Take advantage of things like:

 

-Pre-made holiday food trays-lots of grocery stores even allow you to pre-order and customize these.

-Store staff offering to help you to your car-let someone else do the heavy lifting!

-Shopping online-I LOVE this because I hate the malls at the best of times! Online shopping means no parking hassles, no schlepping from store to store in a ho
t coat, no standing in line and no lugging packages to the car. Many online businesses also offer free shipping.

-Gift Wrapping services-so many charities have booths in local malls and for a donation, they will wrap your gifts for you while you wait. It’s win-win and if you come home with your gifts wrapped, no one can peek!

-Potluck-If you’re hosting a get together or a meal, ask everyone to bring a small dish to share. It’s perfectly acceptable to do this at this time of year and it will take some of the pressure off you having to shop for and prepare everything.

 

If you have any tips, I’d love if you’d share them in the comments! I want to wish you all a wonderful holiday season, however you celebrate and much health and happiness in 2015.

02
Dec 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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Thanksgiving and a Little Personal NMO History

Thanksgiving is my favorite holiday, though I often greet it with a bittersweet sentimentality. I love the quality time with friends and family, the cooler weather, the sound of football on TV, the unpretentiousness and ease (read: no gifts like during Christmas), and especially the FOOD.

But many Thanksgivings ago, for a number of them in a row, I would get Neuromyelitis Optica/NMO attacks. Perhaps it was the holiday stress, the sometimes frigid climate, or the flu season. Perhaps it was merely coincidental. Whatever the reason or reasons, it was almost no fail for four years in a row that I had with my Thanksgiving turkey either a side of optic neuritis or transverse myelitis.

And isn’t it Murphy’s Law that my attacks would come during the holidays (or once, during a hurricane) when hospital and pharmacy staff were skeletal at best? My neurologist at the time not only had cold bedside manners, but also frequently left me to dictate my own healthcare. So many times I’d have to leave multiple messages with his office saying, “Okay, my vision is getting worse. I really need the dexamethasone stat, please.”

The turning point for me came in 2007 with my visit to Dr. Dean Wingerchuck at the Mayo Clinic in Arizona. He wrote a letter to my primary neurologist recommending Rituximab infusion therapy, and after a lot of back-and-forth with insurance and Genentech (the maker of Rituxan) and a botched first infusion, I’m happy to say I’ve been attack-free for 7 years.

And that, my friends, is something to be thankful about.

My message is one of hope. I know what it’s like to be misdiagnosed and given ineffective treatments. Keep searching, and have faith you will find it. You will find the right doctor and the right treatment, and you will lead a full and fulfilling life. Take it from me.

Depending on how you look at it, my life philosophy can be viewed as either optimistic or pessimistic: I always tell myself the situation could be worse. Maybe it’s a defense mechanism, but it’s kept me sane. No matter what, life could always be worse. This is how I find the small things for which I’m thankful.

Last but not least, it wouldn’t be Thanksgiving if I didn’t talk about the food. Here are a few of my tried and true holiday recipes; try your hand at one or all. Happy Thanksgiving to all of you from us at NMO Diaries.

*These recipes are from my Blind Cook blog. More recipes can be found in my cookbook, Recipes from My Home Kitchen.

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25
Nov 2014
POSTED BY Christine
DISCUSSION 3 Comments
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Should NMO patients get the flu shot?

Getting the flu shot is a personal choice. What do I mean by that? As a neuromyeltis optica (NMO) patient I’ve never received a concrete answer as to whether the merits of said flu shot outweigh any potential risks. So that’s what makes it a personal choice; that it is completely up to me to take what little information is available and make a somewhat educated decision. Let me take a step back…

I trust my team of doctors. Since my first attack I’ve always been treated with respect, have had the opportunity to voice my concerns and have always received honest answers. And I’m grateful because I know some patients don’t share my opinion about their healthcare, some even sharing the same team of doctors. Every year I have this discussion and every year there’s still not enough evidence. My neurologist is unsure how my symptoms will react, my general physician sees no harm and my rheumatologist strongly disagrees with the shot for those with compromised immune systems. They all make strong arguments and again, I emphasize, I trust them. I also respect them so much more for just being honest and saying, ‘collectively, we don’t know what the answer is for sure’.

So every year I choose not to get the flu shot. Truthfully, I’m tired of all the drugs in my system so one less excites me.  And I hate needles so if I can avoid one I typically do. But last year my daughter, then a year and a half, came home sick from daycare so often I coined the phrase, “sick diet”, which I attribute to my post-baby weight loss. This year started no different. As soon as the leaves started to change my daughter came home with a cold and I in turn caught it, which became a week long body shutdown. Not wanting to be sick for most of the winter again this year, I opted to try the flu shot finally. On a routine check up with my general physician he suggested the flu shot, which was available right then if I wanted it. It was 8am on a Monday morning prior to a hectic week of work. Sure, some patients feel a little unwell but we guessed the worse I’d feel is a sore arm at the injection site. I have after all, been taking good care of myself, working out regularly, eating and sleeping. As the fluid entered my arm I instantly felt unwell. I started to sweat, developed a headache and my body ached. And the NMO burning…the burning…And just as the nurse put the bandaid on the nausea hit me like the worst stomach bug I’ve ever had. Thankfully a waste bucket was in the room and my modest breakfast found itself in it. Thinking I could just push through my day I headed to my office but within the hour it was evident I had the full blown flu. It took me another week to recover from that teeny, tiny needle. 

I want to put out my disclaimer here: this experience is by no means my opinion that NMO patients shouldn’t get the flu shot. I also want to make it clear that the reaction I had could also have happened to any other person who doesn’t have NMO. I’ve had one bad experience with the flu shot and that’s not enough evidence to determine a pro or against stance. 

If you’re like me and unsure about the flu shot don’t wait until mid season before you make a decision. If you decide against it, encourage your family members close to you to get theirs. Also, I want to reiterate that every NMO patient is different so always consult with your team of doctors.

Erin’s Pregnancy update

2nd Pregnancy

I wanted to give an update on my pregnancy so far. I am now over the half waypoint and starting to feel good! I am over the morning sickness and not so tired anymore. My NMO symptoms all have disappeared! I am still going once a month to my Neurologist getting my blood levels checked, so far so good. You can tell I am defiantly pregnant my belly is showing. I am showing a lot quicker this time about a month sooner this go around. On October 15th we found out that we are having a girl and she is right on track.

 

Keeping up with Allen is hard some days I still get some pregnancy fatigue. Allen does not want a sibling he would rather have a puppy. If you ask him if he wants a brother or a sister? He will shake his finger and say “No No”. But if you ask him if he wants a puppy he lights up and says “Puppy”! Allen has realized also I have a baby in my tummy he will now and then run up to me and point to my tummy and say “Baby”.

 

I just keep praying everything is going to be ok and baby girl Miller is going to be healthy. Here soon we will be talking to the doctors about how I would like to deliver and get everyone on the same page. I go in this Friday for another long ultrasound to make sure she is developing all her organs properly. After the holidays we will be working on her nursery. I will do another update here in a few months.

 

 

10
Nov 2014
POSTED BY Erin
POSTED IN

Uncategorized

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Catching Up!

Filming at UBC

Filming at UBC

It’s been a pretty busy month since I last posted. Since my last post, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals. This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. It’s been a real privilege to be able to contribute to this program in such a meaningful way. Our work is now shifting to ethics, which I am sure will be equally interesting. The video component of the course is currently in editing and I can’t wait to see the final cut!

Last week was UBC’s annual Allies in Health Community & Patient Fair. I spoke on a panel about my experiences in the health care system which included what it;s been like getting a diagnosis and treatment for a chronic illness and the difficulties I’ve faced. The Canadian MS Society, (which has taken Canadian NMO and ADEM patients under their wing) had a booth set up and was handing out information on MS and NMO. I also had a stack of pamphlets from Guthy-Jackson that I handed out to those who attended the panel. This is the second year I’ve spoken on a panel at this event and it’s always a wonderful opportunity to raise awareness for NMO.

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On Saturday, November 1st, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society. As you can see, the day was jam packed! I think there were about 100 people in attendance.

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The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the bio-repository has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Well, that wait is over- UBC will begin enrolling interested patients in the study this week!

The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab for NMO patients. Currently, Canadian NMO patients can sometimes get compassionate coverage of about $3000 towards the cost of the drug, but the remaining balance (which is substantial) must come from the patient or via third party insurance. The cost is prohibitive for most patients. Our local NMO clinic is arranging to have this petition available online and to extend the request to include that the federal government approve coverage Canada-wide. As soon as I hear that the online petition is available, I will be sure to post the link here.

For those of you who are interested, I managed to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include you in the day’s events in this way. Technology is so wonderful for helping our community stay connected!

The next big thing coming up for me is the Grey Cup. For those of you in the US, who might not be familiar, it’s kind of like the Super Bowl, minus the crazy commercials. Vancouver is hosting this year. Two years ago, we hosted the 99th Grey Cup and I had such a good time volunteering, I decided to do it again. I’ll be reprising my role as a VIP Transportation Dispatcher and running a fleet of about 30 cars for the 6 days of festivities. I can’t wait! Here’s hoping our Lions get through the semi-finals!

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.

03
Nov 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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Let’s Celebrate the Pumpkin

Homemade pumpkin bread

Homemade pumpkin bread

This Friday is Halloween, and instead of stuffing your face with processed sugars from the ever gross-looking corn candy, why not eye your jack-o’-lantern and turn it into a healthy snack?

Okay, realistically, I love certain candies—dark chocolate, gummy candies, M&Ms, Reese’s peanut butter cups, and Kit-Kats are among my favorite—and I used to always have a bag of something in the pantry or freezer (if it’s chocolate) to satisfy my nibbling cravings. But let’s face it: I’m not getting any younger (and probably not much healthier), so I try to refrain from those addictive yet oh-so-joyous sweets. (I do, however, currently have a bag of Ghirardelli dark chocolate in my house and only allow myself, at most, one piece a day.)

Another realistic fact to consider is the pumpkin from which you carved that scary or goofy face is not the kind of pumpkin you’d normally ingest; the jack-o’-lantern pumpkins you see stacked high outside the supermarket are a different species from the sugar pumpkins better suited for eating. These are usually found within the produce section of a grocery store during autumn when fall squash and gourds are in season.

Here are some health benefits of pumpkin*:


  1. Contains antioxidants and anti-inflammatory properties. Having Neuromyelitis Optica/NMO already means inflammation of the neurological system, so it’s important to eat foods that will help calm the inflammation. And with so many of us being on immunosuppressants, antioxidants are nature’s non-conflicting immune boosters.
  2. Vitamin A. This aids in eye health.
  3. Vitamin C. Again, helps boost the immune system, which is especially important with the impending flu season.
  4. Fiber. They say those with regular digestion are happier in life. Pumpkin will keep you going (no pun intended), which gets rid of toxins quicker.
  5. Carotids. Like carrots, this is why pumpkins are orange. This helps with cardiovascular health.
  6. Pumpkin seeds contain protein and healthy fats. This regulates cholesterol and promotes brain health.
  7. Magnesium. This mineral keeps eyes and bone healthy.
  8. Potassium and zinc. Helps lower blood pressure.
  9. Tryptophan. This is a natural anti-depressant and mood lifter.

*From “Eat Your Pumpkin: 9 Reasons Why It’s Good For You” on mindbodygreen.com

I’m a firm believer in the philosophy, Everything in moderation. That means, go ahead and eat your candy. But why not balance it out with some healthy pumpkin too? Use pumpkin in breads (pictured above), soups, bisques, pies, or (my favorite and a holiday staple in my household) cheesecake. Who said something good for you can’t taste good too?

29
Oct 2014
POSTED BY Christine
DISCUSSION No Comments
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#TOUGHLIKEME

On September 20th, 2 days before my 5 year anniversary from my first major neuromyelitis optica (NMO) attack, which was a transverse myelitis (TM) attack that left me in a wheelchair for quite some time, I managed to finish a 10 kilometre run with a few members of my family. Originally encouraged by my Uncle Roy who just turned 65 and is planning to run 5 major world marathons, he set out to encourage us younger family members to get active.

This is my family pre 10k race. We’re all still so shiny and clean here. Note that it was really chilly (only 8 degrees celsius) but we warmed up quick!

before the run

 

This is me with my biggest supporter (mainly ’cause he listens to me whine a lot), my husband, Mike. After all these years, this is probably my favourite photo of us.

us

My pre-race message to other NMO patients. I call out other patients of any disease to find their #TOUGHLIKEME moment and be your own hero.

My uncle led us in a big team huddle with some inspiring words.

huddle

And finally after the months of training and hard work, here’s my finish to my run.

This is my family after the run. My Uncle Roy (the R) made us all t-shirts to represent a letter in our last name.  It was rather fitting to run it with my cousins and Uncle and Aunt. When I think about it now these are a few of my biggest supporters especially during my early days of NMO. My uncle in black didn’t run it but he jumped in the photo to be our “space” in our last name. Don’t get confused – van Amerom is my maiden name but I’m now legally (and proudly) a Drolet.

family pic

This is me (in the middle) with my cousins, Allison (left) and Gudrun (right). Allison barely trained but she raises a bunch of kids and runs a farm/vineyard so she’s always running around. And Gudrun ran herself thin for a few years now and was able to keep up with her brothers who are total machines. I’m so proud of both of them.Zoo6

 

To check out my time results compared to all of the other 3000 runners click here. I finished at 1:14:11, which beat my goal of 1:15 but just barely. I’m already trying to decide which run I’ll tackle next.

NMO Information Day, Vancouver, BC

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NMO Information Day
 , Vancouver, BC, Canada

Registration Link: NMO or call Tel: 604-827-3111

Saturday, November 1, 2014  10:00 AM to 4:00 PM

Djavad Mowafaghian Centre for Brain Health 2215 Wesbrook Mall, Vancouver, BC

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

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

-Existing advocacy, government, hospital and MS Society resources and support for NMO

-How can you get involved

-UBC NMO Clinic/Research Program: Update and vision for the future

17
Oct 2014
POSTED BY Lelainia Lloyd
DISCUSSION 4 Comments
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