#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.

Working out with NMO

Since March I have been working out with a personal trainer three times a week while I was doing the diet program with Elizabeth Yarnell. Lindsay is a personal trainer at my gym we would do 1 -2 days upstairs in the gym area then the rest of the days in the pool. When I first started working out with Lindsay I told her about NMO and what my restrictions were. I decided to record my workouts for two reasons, One was showing people what I did during a workout routine and the other reason was to inspire other people they can do this as well. Each workout session is an hour long with Lindsay right there telling me what to do and push harder. When I am at the gym I alternate between legs, arms and core each day. While swimming works out really the whole body and is low impact, I would swim 42-52 laps during a session. I broke up the videos into two parts the first video is pictures of me at my heaviest and me working out at the gym and the last video is my swimming routine and the pictures of me with losing over 66 pounds. I hope you all enjoy and it will inspire you to workout as well!

 

 

 

 

 

Help Take NMO to the Next Level: Complete This Clinical Trial Survey

I always reminisce about how the Guthy Jackson Charitable Foundation’s 2010 NMO Patient Day was the catalyst for the birth of NMO Diaries. That’s why I have a soft spot for GJCF and its mission to better the lives of those affected with Neuromyelitis Optica/NMO through advancement of therapies and search for a cure.

The latest project at GJCF is a clinical trial survey that will bring together people living with and blood-related to those with NMO into a pool of possible clinical trial candidates. Filling out the survey doesn’t automatically enroll you in a clinical trial; rather, it helps measure your knowledge of and willingness to participate in clinical trials.

I, myself, have enrolled in a few clinical trials before, and yes, it takes time and resources, but I participated because I have hope for the future generation that NMO can one day be a thing of the past, like polio! Whenever I have the time and qualifications, I make an effort to contribute whatever I can to better the lives of everyone affected by NMO, including myself.

Even if you aren’t sure, I encourage you to complete the GJCF clinical trial survey and be part of a movement to improve our lives.

01
Jul 2014
POSTED BY Christine
POSTED IN

NMO

DISCUSSION 2 Comments

NMO 5 km Walk/Run 2014

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Clockwise: Event organizer Nancy Reimer, UBC NMO Specialist Dr. Tony Traboulsee, Event sponsor Tim Horton’s brought coffee & Timbits, Coquitlam City Council member Bonita Zarillo & Lelainia Lloyd.

June 1st, 2014 was a beautiful day. It wasn’t just that the clear blue skies and warm temperatures that made it so, but the gathering of 500 individuals who showed up at Rocky Point Park in Port Moody, British Columbia, Canada to raise awareness and funds for Neuromyeltis Optica. This year’s theme was “I am Courage. I am not alone. Standing together to find a cure for NMO.”

I was supporting someone recently who said that the most difficult thing about having a chronic illness is the feeling of being alone. The normal pattern of illness is that you visit a doctor, they give you a treatment, you follow that treatment and you get well. When you have a chronic illness, you just go round and round in a never-ending cycle of varying degrees of being unwell. It can be hard for healthy people to wrap their head around this concept or to understand how alone this can make you feel when your illness is not only chronic, but also rare.

 

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Clockwise: Volunteers helping with registration, UBC NMO Researcher Annie Kuan, The crowd listening to opening remarks, Event organizer Nancy Reimer & son Riley welcoming everyone.

 

For those of us who were fortunate to be present for the NMO walk/run, it was a unique opportunity to connect in person with others who share the same rare diagnosis. When you put two or more NMO patients together, we are immediately interested in comparing notes: When were you diagnosed? How old were you? Who’s your neurologist? What drugs are you on? What treatments have you had? What are your symptoms? One of my fellow NMO patients asked me if I’d ever been paralyzed and while I as answering her question, I was thinking to myself how bizarre it was that this kind of question seemed perfectly normal. Even though we’d just met, there was an instant feeling of kinship and understanding between us.

I won’t go into a run down of the day-my friend and event organizer Nancy Reimer has done an excellent job of that here. You can also watch a 5 minute video made with everyone’s photos from the event here. What I will say is that having our friends, family, health care professionals and community gather together meant so much to those of us who are battling this disease. Their actions speak louder than words.

“There is a community of spirit. Join it and feel the delight of walking in the noisy street and being the noise.”   -Rumi

 

16
Jun 2014
POSTED BY Lelainia Lloyd
DISCUSSION No Comments

Invisible Disability (and getting yelled at for it)

I like to call my handicap permit my “Princess Parking”. I joke around about my permit and its convenience but if I’m being serious I’d rather walk a mile to the doors than live with neuromyelitis optica (NMO). I don’t look sick. I don’t live in yoga pants and hoodie sweaters. I don’t move horribly slow. I don’t have a walking aid (anymore) and I’m not a senior citizen. Instead, I try to always dress well, I’m usually carrying a toddler and you can bet that I’m distracted and in a hurry.

I don’t look like someone who should have a handicap permit. But I do. I have an invisible disability.

I haven’t felt my toes since 2009. Several spots on my body at any given time always feels like it’s on fire. My spine feels like a puppet master is pulling it out from the top of my head. And moving my legs or not moving my legs for an extended period of time (anything beyond 3 minutes) causes pins and needles. Having the permit does make my day just a little bit easier and I’ll take it.

So it’s frustrating when sometimes I get out of the car and people give me a dirty look or even yell at me.

I used to ignore their comments but then I’d find myself quietly stewing in my head. Then I started to see it as an opportunity to educate ignorant strangers on perception and creating awareness for NMO but that’s time consuming if I had to stop and chat every time. Truthfully, I even shoot a dirty look back if I’m in a bad mood and swear under my breath. It rarely happens because my husband is a 6’5” giant but occasionally folks will make comments when he’s with me and he immediately goes into defense mode (I won’t lie – it’s sweet and romantic).

Living with NMO is hard and frustrating. My normal every day is living with pain but I don’t like to dwell on it. I go about my activities to the best of my ability and forget that NMO lurks in my shadow until someone screams, “faker” or “that’s so wrong to use someone else’s permit”. I’m still trying to decide how to react when this happens and I’m looking to the NMO community for your ideas. Maybe there isn’t a perfect solution because people will think what they want to think.