The Benefits of Good Sleep

It’s no secret that good sleep, (which is different than just attempting to sleep) is a powerful mechanism we all need. For those suffering from major illness like neuromyelitis optica (NMO), regular, good quality sleep is necessary for maintenance, repair and I’d even go as far as to say survival.

I suffer from horrible insomnia. I know it’s from a list of reasons and I do what I can to improve it but admittedly, it’s a work in progress. Yes, stress is a factor but that won’t change in my life; I’m the type who seeks out being busy and juggling multiple balls in the air.

Another major factor is what I call “painsomnia”. Currently I require pain medication and sleeping pills to get a restful night. I’m not a fan of more medication so I recently worked with a sleep clinic to find a way to manage this better. The result was that pain will always be a factor and staying still for an extended period of time will always aggravate it. Without medication my arms and legs tingle then eventually ache until they are on fire with pins and needles. On a regular basis my dog finds me pacing through our bedroom to subside the pain.

I’ve put into place other coping mechanisms to help with my sleep quality.

Diffuser – I love my essential oils. The soothing smell of lavender or sleep blends help me feel relaxed.

Positive sleep habits – The sleep clinic suggested cognitive behavioural therapy, which puts into practice good habits like no TVs half hour before bed and meditation.

Good bedding – My recent guilty pleasure is nice sheets with calming dark colours. I find loud bedding counterintuitive.

Bedtime snacks – My medication regime even during the day is tough to swallow (ha!) so I find consuming several smaller meals beneficial to tolerating all the pills. But by the end of the day I’m still hungry so I consume light snacks like air popcorn, a banana and drink a herbal tea like chamomile or peppermint.

Wakeup Light – There’s research that says how you wake up will affect your energy for the day. I’ve always hated the jarring sound of an alarm so we’ve now installed lights and quiet piano music that fades on till it’s time to wake up.

Photo credit: Alexandru Zdrobaualexandru-zdrobau-176844

24
Apr 2017
POSTED BY Jenna
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Thoughts on my recent diplomatic work in Jordan

Women's initiative event

Showing Jordanian women how to make buttermilk biscuits

I just returned from a culinary diplomacy tour hosted by the U.S. Embassy Jordan in Amman. It was my first time to the Middle East, and I thoroughly enjoyed it in spite of the turmoil happening in neighboring Syria. The people I met in Jordan were friendly and hospitable, the food fantastic, and the overall experience memorable. I ate the national dish of Jordan, mansaf, which consists of braised lamb shank, rice, and a fermented goat milk sauce. I ate falafel, shawarma, kibbeh, kofta, kebabs, hummus, labneh, tabbouleh, and tomatoes stewed in amazing olive oil called galayet. Perhaps two of the most memorable things I tasted were eggplant and kanafeh. The eggplants were often grilled or roasted and tasted superb—never before had I loved eggplant as much as in Jordan. They would be mashed into yogurt or tahini and made into a dip called moutabel. Kanafeh is an Arabic dessert consisting of melty cheese topped with crispy vermicelli-like pastry, doused in rose syrup, and garnished with pistachios. I loved it, and I’m not even a sweets person.

But I digress…

Mansaf

Mansaf, the national dish of Jordan

While in Jordan, I participated in several events with key messages ranging from women’s empowerment, disability awareness, and youth culinary education. The main takeaways I tried to leave behind were the universality of food and, thus, the relations between America and Jordan and, therefore, humankind.

Petra

Petra: one of the 7 wonders of the world & where Indiana Jones and the Last Crusade was filmed

Every time I am invited to participate in events like these, I am reminded of the bigger picture of my life: that is, I lost my vision, which made my story and accomplishments unique on MasterChef, which allowed me to achieve a certain amount of fame, which I can then use to raise awareness and advocate for social issues like the rights of women, Asian-Americans, and those living with disabilities and/or vision loss. I am also reminded of my fortunate circumstances in that, being a Texan, I was provided certain resources through the Division for Blind Services at the Texas Department of Assistive and Rehabilitative Services; without this agency, I would not have been able to receive orientation and mobility training, learned how to use computer screen readers, go back to school for my MFA, relearn how to cook, and live a more independent life. I feel lucky that I come from a place where such support is available. In countries like the Dominican Republic, where I also recently visited, and Jordan, such resources are still in their infant stages, if they even exist at all.

Arabic dishes

Our dinner spread of Arabic dishes

My message today is just to remind us of our blessings and that the world can still use our help, no matter our abilities and backgrounds. You don’t have to fly to the Middle East for Embassy work; you can just start with small things. Donate $20 to a charity in whose mission you believe. Educate your friends, family, and community of a cause about which you feel strongly. Identify your gifts and talents, find your passion issues, and think of a way to contribute. They don’t have to be big leaps. Remember that all movements started with one person taking one small step forward.

Dead Sea

Dead Sea: A mini-holiday between days of work

I truly believe it’s this attitude that has helped me remain resilience throughout my setbacks with Neuromyelitis Optica/NMO and vision loss. We feel the most joy when our lives have purpose. Today I challenge you to do one small kind thing for someone else. If we could all think and act this way, maybe one day, there will be peace in the Middle East.

Kanafeh

In Amman, I fell in love with kanafeh.

17
Apr 2017
POSTED BY Christine
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#SorryNotSorry

IMG_0395Hi everyone, I hope this finds you all reasonably well. I am still pretty sick and no closer to knowing the why of it. I’ve had a ton of blood tests. Yesterday’s blood draw was nine vials and apparently the mixing of my blood with…wait for it…viper venom (Seriously!) as part of one test. I hate snakes and that little nugget of information totally creeped me out. I am having a CT with contrast later this week to see if they can figure out what’s going on. At this point, I really don’t care what it is, as long as we can make the pain stop.

I’ve been thinking how when I get seriously ill, I struggle really hard to keep my commitments. It’s this hardcore, deeply ingrained thing of wanting to keep my word, but at the same time, I bow out of being social-I can’t commit to hanging out with anyone. I used to apologise for this (because Canadians are painfully polite and we apologise without even thinking about it) but I’ve consciously stopped doing it. At this point, if you are in my life, you know I live with chronic illness and this is part of the package of being friends with me. Sometime I have to withdraw into my own little world as a measure of self-care. (Or survival, if I’m being totally honest.)

It’s been interesting to see how people react to having a friend with chronic illness. I’ve had my fair share of people who simply walked away. In the beginning, it was painful, but over time, I’ve shifted how I think about it. I realized that it has everything to do with them and really nothing to do with me.  I have a sacred circle of old friends who have been there for me, no matter what. They are my rocks. I also have some amazing new friends I would never have connected with if it weren’t for my illness. Many of them live with chronic illness and/or disability themselves, so they get it. There’s a comfort in being a part of a community of people that you don’t have to explain yourself to. We can talk about the hard stuff without it being weird or awkward. (And sometimes, we can laugh about it too!)

I think that serious and chronic illnesses can test any relationship. In some ways it changes who you are. When I am in a lot of pain, I don’t have the energy to be the kind of friend I want to be. As much as I don’t like it, this is part of who I am now and  it doesn’t feel good to have to apologise for being myself.

So….this is me.  I am who I am, no apologies.

04
Apr 2017
POSTED BY Lelainia Lloyd
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How to support others in crisis

Loved one: Its been tough feeling this horrible, dealing with doctors, missing work, but it’s nothing compared to what you’ve been through or go through everyday.

Me: They aren’t the same thing. My normal is different than yours is. It doesn’t and shouldn’t minimize what you’re going through. I’m still here for you, even if just to listen.

Loved one: No, I know…I just don’t know how you deal with feeling like this all the time. 

giving

There’s a funny thing that happens when you’re diagnosed with an incurable, possibly life threatening, beast of a disease – no matter what ailments affect other people they will inevitably compare their struggles to ours, and more often than not, feel like they don’t have a right to complain to us. I know the above conversation or some version of it always comes from a good place. I know my loved ones would never minimize how difficult my everyday is. 

But we’re not talking about me. We’re talking about you.

I get it, being dealt a bad hand with you or your loved ones health is head spinning. Suddenly there are doctors with different opinions, a foreign language with long terminology, appointments, check ups and tests. There is pain, the emotional sometimes feeling more raw than the physical challenges. It will change your current lifestyle and for some even require permanent changes. Nothing makes you feel more vulnerable than failing health. 

Having dealt with medical practitioners for years has certainly given myself and even my husband a level of expertise we wish we didn’t possess. We’re not regularly vocal about my health but we also don’t hide that I have neuromyelitis optica (NMO). Friends, family, even co-workers and clients will seek us out for advice when they encounter the medical ‘system’. They know we’ve put in our time and are continuous learners and they need to ramp up their knowledge now.

I try to avoid using language like, “well I did this” and never use language like, “it’s not as tough as this”. I will always ask how their body feels but also what they are thinking about, no matter how irrational it might sound. I am grateful to hear them out because many did and still do for me. I let them know I am always hear to listen because their loved ones will also need time to process a new reality.

I am relatable for all the wrong reasons. Perhaps their health challenge is only temporary like a surgery with a recovery period or it is unfortunately a forever deal. Regardless, their today isn’t great and I want to support them like others have for me. 

Photo credit: Evan Kirby

The 2017 Guthy Jackson Foundation NMO Patient Day is tomorrow, Wednesday, March 15

Every year when the annual NMO Patient Day sponsored by the Guthy Jackson Foundation rolls around, I get nostalgic since that’s where this blog was born.

Unfortunately, I haven’t been able to attend for quite a few years since I’m always tied up with other events during the Patient Days. I know there are many patients and caregivers who are also unable to attend, and the nice thing is the GJCF will often stream or upload key videos from the day’s events online for worldwide viewing. You can check out this year’s events by visiting the 2017 NMO Patient Day webpage. I heard they’ll be active on social media this year, too, so be sure to check out the GJCF Facebook and Twitter for updates.

If anyone is attending in person or remotely this year, we welcome your comments.

The movie Burnt

Here is a short blog about me recently watching the Burnt. Burnt_Poster_Updated

YouTube Preview Image

And So It Goes…

hives

This is how it started. It got much worse from there.

It’s been a bit of a rough month. In early February, I was pretty sick with a cold. (This is a very rare occurrence for me.) In a moment of desperation, I broke one of my own cardinal rules of “no over the counter medications.”  I was experiencing an itchy cough that would leave me gagging and gasping for air, so I took something to try and help calm it. I was so focused on making sure the medicine didn’t contain red food dye (I am allergic to it and 99% of cough syrups contain red food dye) that I didn’t realize the medication contained acetaminophen, which I am also allergic to. I ended up with swelling and hives that burned like I’d been dipped in hot oil and I felt terrible. It took 6 days of steroids and 10 days of Benadryl every 4 hours before it was under control. I won’t ever make that mistake again!

I am about a week away from my second round of Rituxan infusions for NMO and RA. I am really curious to see if I can get through an entire summer without an NMO relapse. If I do, it would be the first time in 10 years. I dread summer because I always end up having to do IV steroids and I don’t do well in the heat. I hibernate the entire season, going out as little as possible, unless it’s cooler and raining. This year will be an experiment to see if things can be better or not with the new treatment.

I am still working on getting the RA under control. My knee joints have thankfully stopped hurting for now. That’s a huge relief-the pain was excruciating to the point that I was wondering how feasible it would be to chop my legs off. (Okay not for real, but you know what I mean.) My hands and fingers are still painful off and on, but better that they were. I still have what’s being called tendonitis in my right elbow which is giving me grief. It affects my ability to do even the simplest of things and greatly impacts my ability to sleep. I am going to have a cortisone injection in the joint after my Rituxan infusion. I am completely freaked out about this, (I had a cortisone injection in my wrist once and it was awful experience) but if it helps, then it will be worth it.  In addition to Rituxan, I am also doing weekly injections of a chemo drug and taking a heavy duty anti-inflammatory to try and get the RA to settle down. This means I am struggling with a fair level of nausea on an ongoing basis, which is not fun.

So, I am muddling along. I am grateful for the small improvements as they’ve happened and hope the trend towards less inflammation and pain continues. I am not the most patient person, as my friends will tell you. I tend to want to accelerate the rate at which things get done-that’s just my nature. Dealing with all of this has forced me to surrender to the process, which is hard. I am not very good at “wait and see” however, that’s about where things are at.

Wishing those of you who are lucky enough to be able to go to Patient Day in LA in a couple of weeks a safe journey and I look forward to hearing all about it.

22
Feb 2017
POSTED BY Lelainia Lloyd
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Happy Valentine’s Day to all our NMO caregivers!

Christine & John at University of Houston fundraising campaign

Me & my hubs

I am, and have always been, pretty independent. Even after I was diagnosed with Neuromyelitis Optica/NMO, I drove to my doctor’s appointments and outpatient treatments alone. Then I began losing my vision because of the NMO, and I continued to live by myself, learned to prepare food and pay bills and do laundry all on my own.

And then I met John, now my husband. He respects my need for independence, but I’ve since learned it’s nice to sometimes count on others, too. Whether it’s reading an expiration date on an item in the pantry, discerning between the shampoo and shower gel in a hotel bathroom, or navigating the New York City streets or the grocery store aisles, it’s easier to ask John than to figure it out on my own.

NMO and vision loss have taught me that it’s okay to ask for support. I’ve learned that most people are willing to assist, and that if you express gratitude, they’re even happier to help.

For that, I value my husband, and I want to dedicate this week’s post, in honor of Valentine’s Day, to all our caregivers, from parents to siblings to spouses to friends. Without you, we’d still survive, but with you, we’re much happier doing so. Thank you for making our lives with NMO that much more bearable.

13
Feb 2017
POSTED BY Christine
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Snowboard like Superman

This is me last week and unless I tell you no one would guess I have NMO.

snowboard

If you’ve read any of my previous snowboarding posts you’d know I have an ongoing love/hate relationship with the sport. It’s been 9 years of start/stop learning and I feel like I’m only marginally better (if I’m being honest I’m not that bad anymore but it feels like it). No one would fault me if I quit since neuromyelitis optica gives me a great excuse. Believe me, the thought has occurred many times but what I’ve had to come to terms with is that I’m not built to quit. In my mind it’s a ride or die scenario, which makes no sense to a lot of people. “Go to the spa instead”, “Go shopping”, and “Take it easy on yourself” – phrases that repeatedly make me feel like a loser. 

What keeps bringing me back is the magic of the mountain. When I finally allow myself a break I pull over to the treeline, find gratitude and say a prayer. Sometimes I pray for myself but mostly for my daughter and that we can give her all the tools I didn’t get growing up. If she can be better than me, smarter than me, tougher than me, in every possible way I’ve done something right this lifetime. In these moments I am grateful for the opportunity to be called Mom. I am grateful for one more day that NMO hasn’t robbed from me.

But snowboarding with NMO is tough. This year by sheer willpower (and against doctor recommendation) I fought against horrible vertigo and diminished vision. Right before we left for our trip it was determined that I was battling a minor ON flare and without the right care it would likely lead to a major attack. And I know, this is where I hear the voices of all the NMO patients in my head telling me to take care. But if there’s anything this disease has taught me it’s that my willpower is much stronger. Yes, I felt winded a lot of times, I sat on the mountain and threw up breakfast and then later my lunch, and more than once my body just stopped responding. But letting this disease win wasn’t an option. 

The hardest part is being alone. After 9 years (again, start/stopping) I’m still not strong enough to ride with everyone all day. I can go a decent speed when I’m warmed up but it just isn’t sustainable. Not when I need breaks, need to vomit regularly and need to freak out at myself and my God. My husband, family and friends will do a few runs with me as a warm up but I am always overwhelmed with such guilt when I hold them back and we all know it’s inevitable. To stay safe I must admit defeat to NMO because pushing myself too far has/will lead to injury. My abandonment issues always gets the best of me then. I isolate myself with music on the mountain and tell myself I prefer the solitude but after several days “wanting to be alone” I have a fight in my head with my God. 

Me: Why me? Hasn’t my life already been tough enough? It isn’t fair I have NMO too. Why can’t I be healthy like everyone else on this freakin’ mountain.

God: …

Me: I hate this! I hate my body! Everyone bails out on me, even my body! Even my own immune system is quitting on me! Having faith in you is complete and total bullshit!

*epic fall*

Me: (imagining God looking at me all smug) So it’s gonna be like that. Push me when I’m down.

And then I have to start the cycle of willpower and positive energy all over again, all whilst strapping the board on again and still with the limited vision and vertigo. 

But I’ve said it before and I’ll say it again, getting to the bottom of a run is addictive. The sense of accomplishment over all these things makes the mundane Monday mornings of life seem easy. I feel super human that I got down a mountain just like regular folks. It’s how I imagine Superman must feel like when he’d really like to brag that he’s waaaay stronger. And like Superman only a few people know my secret, this ugly invisible disability that really gives me super mind strength. 

13
Feb 2017
POSTED BY Jenna
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Representing at the 2016 EndMS Conference

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger;  with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger; with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Hi Everyone! This is the first chance I’ve had to wish everyone a Happy New Year! I hope everyone had a good holiday season. Today I wanted to share a bit about how I wrapped up 2016.

The first week of December, I flew out to Toronto at the invitation of the MS Society of Canada to participate in HEARMS day (which stands for Hope and Engagement through Accelerating Research in MS) and the ENDMS conference. HEARMS day is an opportunity for junior MS researchers to meet with and learn from MS community members who share their personal perspectives about why research is important and what areas of research should be further explored. (Many researchers only work with lab animals, so they don’t get to interact with the actual human beings their research affects.) We spent an entire day having deep and meaningful conversations and sharing information. It helped remind them who they are fighting for and in turn helped community members understand the impact of the research dollars they raise and the importance of participating in research.

The ENDMS conference was attended by researchers from across Canada and around the world. There were four days of research presentations and while I did not understand 100% of the science presented, I understood a large portion of it. Part of that understanding came from spending the last two years serving as the Community Representative for BC, acting as a lay reviewer on the Personnel and the Clinical and Population Health grant review committees. I’ve read through numerous complicated medical research proposals and as a result, learned a fair bit of the language and concepts. While I was at the conference, I had a conversation with one of the researchers I worked with on the Personnel committee about some research (the anti-MOG research Dr. Levy is doing at Johns Hopkins, in fact) and he made a point of telling me that he could see how much I’ve learned and that I should be very proud of that. I’ve always thought of myself as a hardcore right-brainer, so hearing this from someone who lives and breathes medical science meant a lot.

When I was first asked to attend the conference, I wondered if I would feel intimidated being in the company of about 200 researchers and clinicians. From the moment I sat down with them, there was nothing but mutual respect and deep sense of solidarity in working together. It goes down as one of THE BEST experiences of my life. It was an absolute pleasure and honour to be a part of it.

The rewarding part of having all this amazing insight and information has been being able to share with my community here in BC. Because I have had the opportunity to learn with and from researchers, I have a deeper understanding of the work they do and where MS research is heading.  This allows me to make it accessible to others.  I am able to say “Here’s what I learned and here’s why it matters.” Being able to do this is really gratifying. People cannot champion what they don’t understand. Now when I talk to people about research funding, I’ve got the experience and knowledge to explain exactly what the impact is. It’s very empowering.

As an advocate, I am very passionate about patient inclusion. I believe we bring something very important the table.  I am so grateful that the MS Society of Canada continues to offer me the opportunity to advocate for MS and NMO patients. This is the work of my heart.

23
Jan 2017
POSTED BY Lelainia Lloyd
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