#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
DISCUSSION No Comments
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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. 

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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

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
DISCUSSION No Comments
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Enduring NMO back pain

We all know back pain but for neuromyelitis optica (NMO) patients most of us know it that much more. Ever since my transverse myelitis (TM) attack in 2009 I’ve known serious back pain to be part of my every day existence.

I recently threw out my back with an awkward twist. There was a small pop noise and a shot of pain and then it subsided to something manageable, or at least I thought. Over 2 weeks I took it easy and figured with a little rest it would recover back to my normal. But it didn’t happen and after a few more weeks where it really affected my every day tasks like cooking in the kitchen, sitting at my desk or even walking, I had to ask for help.

I’m currently undergoing physiotherapy treatments for a serious case of sciatica nerve pain and a rotated hip but what else I learned about my body shocked me.

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In this first x-ray image we found not one but two fused sections of vertebraes in my neck, a genetic defect that unfortunately nothing can be done. But it certainly helps explain my forward head and poor posture, which trickles down to lower back pain to compensate the weight of the head.

In the second image it’s very clear I suffer from scoliosis. There are two types: acquired (from poor habits that can be improved) and genetic (that nothing can be done and that’s evident if the scoliosis is found in the lower spine as well). As it turns out I’m just lazy so I’m needing to re-train myself on how to sit properly and I’ll be taught how to undue my acquired scoliosis. 

In the third image we see my hip rotated (it’s smaller than the other, which is how we can see it isn’t sitting correctly), but we also discovered poor spacing between my vertebraes. The gaps between vertebraes should increase the further we go down the back but mine does the opposite. The disc that cushion impacts have also diminished. No one knows why my spine looks like this but at 35 years of age it could be anything from major impact falls, pre-arthritis, poor bone density or in my case repetitive high dose steroids that have deteriorated the quality of my spine. Oh, and it could have something to do with those awkward lesions left over from the TM attack.

As part of the treatment I’m seeing a chiropractor, physiotherapist, athlete specialists, massage therapy, and eventually kinesiology all working with the same clinic, Rosedale Wellness. I’ve been blessed with this incredible team of professionals who are taking a holistic approach to my recover but more importantly my long term sustainable spine health. It hasn’t been easy though. The treatments leave me dazed because my body isn’t familiar with the new posture setting. The sciatica hip pain is relieved temporarily but as I return to life it slowly returns. And the time commitment to good health is something I’ve had to decide I will stick with until the team feels I have enough tools and recovery; As a mom and entrepreneur I’ve had to off shift my responsibilities and that’s resulted in late nights as my new norm. 

For NMO patients who think back pain is something that just comes with the package I recommend speaking to qualified specialists because it might not be the case for you, just like it is starting to be for me.

How to live with NMO and still enjoy your vacation

Christine with family in Vietnam

Family vacation in Vung Tau, Vietnam

We’re deep into the summer season, and that means summer vacations. I just got back from a month-long stint in Vietnam—a half-vacation, half-business trip—and while it feels spectacular to be home, travel is what I live for.

Travel opens your mind. It keeps you grounded. It makes you realize you are just a small speck in this universe, and that there is not necessarily a right or wrong, good or bad way to do things. This is why I travel and why, when I’m asked, “How can I learn to be a better cook?,” I say, travel.

Of course, I also have Neuromyelitis Optica/NMO, and traveling, even for a healthy person, can be stressful on the mind and body. Before I step foot out the door, I must plan, plan, plan. Here is a practical checklist to ensure you have a great vacation in spite of NMO.

1. Pack your meds, both those you regularly require and those you may need for acute situations.

I always carry my trusty meds on me. In a little container I purchased from The Container Store, I stuff:


  • Prescription meds in case I experience symptomatic neuropathic pain
  • Over-the-counter meds like ibuprofen in case of aches or general pains,?li>
  • Vitamins that I take daily
  • OTC sleep aids of which I sometimes take half when trying to adjust to a new time zone

Sometimes I will pack a prescription course of corticosteroids (e.g. Dexamethasone) in case I experience a NMO flare-up while traveling; of course, you should consult with your neurologist first to see if this is a viable option for you.

The above is my personal rundown of meds I pack but, just as every patient’s NMO is different, your list of meds will also differ.

2. Bring your insurance card and any other information you may need in case of an emergency.

We all know NMO can be unpredictable. An attack can be triggered by stress, fatigue, allergic reactions to foreign foods—all things we encounter during travel. Sometimes, an attack can happen without a detectable reason. You never know when you might end up in the emergency room in another city or country, so make sure you bring along with you any information you might need should you find yourself in this unfortunate situation: your health insurance cards and information about NMO for the clinic staff (since it’s still unheard of by many), which you can obtain from the Guthy Jackson Foundation.

3. Wear and pack comfortable, breathable clothes and shoes.

Comfort is key when on vacation. My so-called “en route uniform” usually consists of a UNIQLO Airism top, black GapFit sweatpants, sneakers, and a lightweight cardigan. If I’m traveling for work and have to look halfway decent upon arrival, I’ll wear a tee-shirt dress, leggings, and slip-on Chelsea boots or flats. The essentials are always breathable, wrinkle-free apparel in which you can move freely, an unrestrictive waistline, and shoes that you can easily remove at airport security checkpoint. Layering is important )hence the short-sleeved tops accompanied by a thin cardigan) because you’ll more often than not find yourself going from mild climate to freezing temperatures aboard an airplane to makeup-melting temperatures at your tropical summer destination.

And if you do book a vacation to somewhere hot, consider bringing this cooling tel—just wet, shake, and place on the back of your neck to cool your body down.

Being in a new environment and getting there and back are stressful enough—minimize the stress by donning comfortable clothing.

4. Use your cane or request a wheelchair as needed.

Request a wheelchair to help you navigate the airport to preserve energy. This can be done as soon as you get dropped off at the airport curb—just flag down an airport employee and say you need wheelchair assistance to the gate.

You should be able to go through the special TSA security line reserved for the elderly, disabled, or those traveling with small children. Then when you get to your gate, tell the gate attendant you’ll needto pre-board. (Or if you have a cane or are seated in the wheelchair, they should automatically pre-board you.)

Navigating an airport is stressful enough, so take advantage of these services designed to alleviate travel fatigue.

5. Allow ample time for rest between activities.

Lastly, once you’ve reached your destination, make sure it’s truly a vacation. Avoid packing your schedule so tightly that you fail to relax and enjoy, which are the points of a vacation. Slow down so you don’t miss the unexpected, serendipitous discoveries of a new place.

I made this mistake when I backpacked through western Europe the summer after I graduated college. Of course, I was a lot younger then (and thus had the energy to run from museum to internet cafe to landmark to train station). But I remember being in Florence towards the tail end of my trip, and after seeing Michelangelo’s statue of David masterpiece, I just shrugged and thought to myself, “This is the umpteenth museum I’ve visited in Europe—they’re getting to be all the same.”

I regret letting that complacency settle in, and since then, I knew better than to overpack a vacation schedule. Now I allow myself more time for leisure and rest. After all, I can’t enjoy exploring when I’m exhausted. It’s nice to be able to go back to a “home base” (I.e. Hotel or airbnb) to get in a little R&R before hitting the streets again in search of the next site or restaurant.

So there you have it: my personal 5 tips for an enjoyable vacation in spite of NMO. Who said you can’t have fun, travel, and experience new things with NMO? Tell your NMO to buzz off—you’re on vacation!

01
Aug 2016
POSTED BY Christine
DISCUSSION 1 Comment
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Good mental health is critical to managing your physical health

I imagine I’m probably one of the worst patients to treat. I fully understand the advice I receive but I’m horrible at following them. We’ve all been told it; Stress can really affect how we handle existing and future problems arising from having neuromyelitis optica (NMO) and admittedly, I’m in the habit of taking on quite a lot.

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I love to work hard and I work to live well. The type who suffers from wanderlust, adventure and trying new things, I generally only operate at hyper speed. A couple of months ago I knew I was at yet another crossroad. Where previously I could manage daytime fatigue, the burning sensation and general pain, my body had started to feel sluggish, unresponsive and exhausted. I tried to sleep it off, eat well and rest but I couldn’t bounce back. I recently blogged about a flare as a result but still couldn’t feel better.  (more…)

So Many Pills

I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.

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Patient Day 2016

Guthy Jackson NMO Patient day is always a special day for me. It’s the one-day a year I get to connect with my NMO family. This year marked my 5th time attending this special day, this year I brought my mom. I wanted her to meet my NMO family and some of the doctors that I have talked with. Every year at Patient day Ms. Jackson does a fabulous job putting on this event for patients. It is such a great opportunity for patients to connect with each other and talk to some of the top NMO doctors. It is so nice to talk to another person that has NMO and talk about what you are feeling and they completely understand. This event is so special Ms. Jackson has doctors all over the world to come talk to us patients about whatever questions we might have. Also patients get to find out what’s happening new in the medical world of NMO.

The big topic this year was researchers talking to us patients about trying medical trials for new drugs for NMO. It was very interesting and there were some good points made about this topic. If you are interested to learn more about the clinical trials please visit the Guthy Jackson website there are some great resources there. The also had several breakout sessions this year from asking the Docs, nutrition, mediation, navigating insurance, managing pain and simplifying the science of NMO. It is a day where you can learn as much as you can about having NMO or being a caregiver for a NMO patient.

The other big thing is donating the blood to the Circles program that hopefully helps a cure for NMO. I strongly encourage you to do this if you are a NMO patient and your family. We all have a piece in this very large puzzle and we need to work together to help find the cure.

When the conference is all over with the patients gather around and have dinner and just talk to each other and have a good time. We are all like one big family and we really enjoy spending time with each other and like I said this is a one-day thing we get to bond like this. Its hard to say goodbye at the end of the night to each other. But we know in 364 more days we will be reunited together again.

http://guthyjacksonfoundation.org

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What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.

Guest Blogger Heather Sowalla NMO and Teens

A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.

To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.

This year, for the 2016 NMO  Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.

The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.

Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.

I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.

We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.