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

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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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.

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.

logo-1

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
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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.

Patient Burnout

noSo for the last 2 years, I’ve been volunteering with the UBC Health Mentor’s Program. The way this program works is that 4 future health care professionals are matched with a Health Mentor who has a chronic illness and/or disability or is a caregiver to someone with chronic illness and/or disability. The program offers students the opportunity to learn about patient-centred care and collaborative care through working with their mentor and fellow group members for a period of 16 months. This program has been accredited as part of their formal education and includes students from the medicine, nursing, dentistry, pharmacy, physical therapy, occupational therapy, dietetics and speech and language pathology & audiology. I am just in the process of finishing up with my current cohort, which is my second group of students and waiting to hear about a third.

These students are so excited and invested in the experience and want to learn as much as they possibly can. What sometimes happens is that something I’ve said really stands out to them as a key piece of learning. Often they will say to me “I remember when you said….” and cite an example of something that hit home for them that they remember. I find it fascinating what gems they glean from our shared experience.

One day I was talking about how sometimes, when I am going through a particularly rough time physically, how onerous it can be to have multiple doctors appointments, tests or treatments in different cities and different hospitals taking up multiple days in a week or a month. It can get pretty overwhelming and leads to what I call “patient burnout”. When I mentioned this in passing to my students that day, it immediately got a reaction. “Patient burnout?!? That’s a THING?!? I thought just doctors got burnout?”  This launched a very interesting discussion about how it feels to have to continuosly make myself vulnerable to medical professionals when I’m not feeling well and how emotionally exhausting a period of intense medical care can be. It had never occurred to them that this could even happen or how it might affect patients.

Given how sick I was in August and the fact that I spent 12 out of 31 days at a hospital having either a doctor’s appointment, a treatment or a test I’m feeling quite burnt out right now. I still have 2 more major appointments in the next two weeks to get through and at this point, while they are necessary, I am gritting my teeth just to get through them.

So what am I doing about it? Well one thing I’m doing is putting a moratorium on medical appointments in October. Yes, I am taking the month off. Unless I am bleeding out the eyes (seriously, that has happened to me!) I am not going in. Sometimes you have to say NO to these things in order to say YES to yourself. I am also going on a brief holiday that I booked months ago which now couldn’t come at a better time. I’ll be spending time in the mountains hiking and enjoying a change of scenery with my husband and best dog at my side. That always helps me feel grounded and refreshed again.

Self-care is always a work in progress. Sometimes, when I am in the thick of dealing with medical stuff, I have to just stop, take a breath and ask myself “What do I need right now?” Sometimes I need to call my best friend and vent. Sometimes I need to connect with my support group to know I’m not alone. Sometimes I need to escape to the movie theatre for a couple hours for a mental break. Sometimes I need to put my hands to work in my studio and sometimes I just need a good hug.

I believe our mental health affects our physical health, so the more self-care I practice, the better off I will be. If I feel myself bordering on patient burnout, then it’s my responsibility to take immediate action. Prevention is nine tenths the cure!

 

08
Sep 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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How does NMO define you?

There have been various research studies published by the International Committee for the Study of Victimization that look at people who have suffered serious adversity, everything from disease, prisoners of war and accidents and then continue to survive. Their studies have categorized people into three groups: those who were permanently dispirited by the event, those who got their life back to normal, and those who used the experience as a defining moment to make them stronger. I believe they call it the “hardiness factor”.

Over the years I’ve met NMO patients and their caregivers (because disease affects our loved ones too) in all of these groups. To say the first group saddens me is an understatement – I’ve personally come dangerously close to giving up so I completely understand the feeling. In fact, I’m sure I’ve done the range of groups several times over. When I was first handed the diagnosis all I wanted was to get back to normal. To this day I’m still not sure I’ve ever really acknowledged my true feelings about the diagnosis and all the events afterwards. Most days living with NMO is just a forced lifestyle change but every once in awhile I like to push the limits and make a point of trying to live life to the fullest. I know there are other patients far worse than me, some in wheelchairs or walking aids. Having experienced that temporarily I know that could easily be my reality too one day so I in that sense NMO defines me and how I challenge myself.

As of a couple of weeks ago I’ve been sporting this new accessory. DSC_0499My uncle, who just turned 65 yrs old, is a world marathon runner. He encouraged my entire family to participate in a 10k run coming up this fall. When I received the first email from him my initial reaction was that it just wasn’t possible. I haven’t run or even tried since my diagnosis. In my previous life I’ve completed a few runs and I always found it exhilarating. After several more nag emails I thought I’d take our pug for a longer walk and see how that went. Before long I was working through the back pain and I registered both myself and my husband towards a new fitness goal. That went well for several months. I was even running up to 5k regularly every other morning at 6:15am. But then I got brave and stubborn. A combination of limited feelings in my legs and being head strong led to damage in my ankle and this very unattractive air cast for 4-6 weeks.

So here I am 3 weeks before this run and I want it so bad. I’ve taken the cast off at home as much as possible but it still hurts more than I’m willing to admit. I’m a mix of anger, disappointment, demotivation and pent up energy. This will be my third attempt at this particular run having become ill with NMO and bronchitis twice before. And there are other family members registered who I don’t have a high opinion of anymore and I’ll be damned if they run it but I don’t.

This run is personal for so many reasons.

As of right now I don’t know if I’ll get to run it. At this point I don’t feel I’ll be ready. I’m still hoping to try but won’t at the cost of permanent damage. This injury breaks my heart but not for the obvious reasons but because the last several months have been a glimpse of who I used to be and I miss her.

Shattered

Friday, I was tlelainia08idying up in my studio and I smashed a vintage candy jar. It slipped right out of my hands. My hands are failing me right now. I am struggling, even typing this. As an artist, I can’t tell you how scary that feels. I had 3 days of IV steroids last week and I feel shattered, just like that candy jar.

Right now, my throat is raw from acid reflux, which I get every time I have steroids. I have doubled up on the medication that’s supposed to protect my stomach, but once again, it’s just not enough. My stomach is raw. I can’t eat or drink without causing pain. I am so thirsty, but drinking just makes things worse. I feel like I have strep throat and it hurts to talk. My vision has been blurry off and on and I’ve had some horrendous headaches.

Yesterday, I took my dog to his annual vet appointment. When we came home I decided to lie down for a nap…I woke up 5 ½ hours later. The whole day just blew by. I was up for a couple hours (long enough to check in with my husband who’d been at work all day) and then crawled back into bed. I lost track of how many hours I slept.

Sometimes the best I can do is survival mode. It’s not by choice and it’s something I am still working on adjusting to. I’m sharing the truth of this moment (without wanting to sugar coat it) so if you’re living with NMO and struggling right now, you’ll know you’re not alone. I’m right there in the trenches with you, fighting for all I’m worth. We may be bruised and battered, but I promise you, we are unbowed.

 

 

 

 

 

11
Aug 2014
POSTED BY Lelainia Lloyd
POSTED IN

Everyday life, NMO

DISCUSSION 6 Comments

5 Years Living with NMO

Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.

Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.

It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.

Heat Intolerance and NMO

I have a love/hate relationship with the sun.

The winter was long and extra cold this year. I felt an overwhelming sadness by the constant darkness, so much so that we took two trips down south just so I could feel the vitamin D warm my skin. The natural sunlight gives me a boost of energy, it helps me recharge and most importantly it helps calm those pesky neuromyelitis optica (NMO) symptoms that happen in the cold. But too much of one thing is a bad thing…

Now I find myself in the heat of the summer, already scanning the Internet for hotel deals to stay in Whistler next winter. With the heat comes a different set of NMO symptoms that plagues me. The fatigue bothers me the most because I always have a jam packed day and love to keep up to my almost 2 year old daughter. I’m irritated by the weakness in my hands, quietly cursing under my breath each time I’ve almost dropped a mug or struggled to undo a bottle cap.

They call it “psuedoexacerbation”, where symptoms seem or actually do get worse. It can happen in the cold and/or the heat, exacerbating different or the same symptoms. If you’re unlucky like me neither climate is preferred. The cold/heat can slow the nerve impulse transmission to the already damaged parts. Fun, right?

I’ve tried the cooling vests, ice packs, etc. with little or no success so like everything else in life (and this disgusting disease) I find planning helps make things a little easier. Not that I avoid the heat but I’m strategic about when I expose myself. The sun is at its highest early afternoon so I get my tasks done inside then. I take walks or bike rides with the family after dinner time and fortunately my husband does all our yard work. If I find myself in the sun midday I take my time, take breaks and try to drink a lot of water. And always schedule in time for rest afterwards.

It’s much more convenient to take the easy route and complain about NMO but instead I choose to consider it a disciplined way of life, one that requires me to always plan ahead.