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

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
DISCUSSION 1 Comment
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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
DISCUSSION 2 Comments
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The Holiday Season is Here!

As I am gearing up for the next few weeks it’s going to be very busy time. First I would like to wish everyone a Happy Thanksgiving! We are traveling to Kansas to see my husband’s family this year for 4 days. This time of the year just seems like chaos for everyone till after New Year’s. As NMO patients this can be challenging for us trying to keep up with everything and trying to take of ourselves. I know for me this time of year is very exhausting and for that I need to thank Starbucks since I will be visiting them everyday till after New Year’s.  Once we get back from Kansas I will be decorating the house for Christmas. I am one of those weird people that put up four Christmas trees because I love Christmas trees! Also it’s that time of the year for Elf on the Shelf to appear and this year we are having another elf joining our elf Buddy I love doing elf on the shelf even though I stress about it too much some times. The look on Allen’s face is just worth it every morning when he is looking for Buddy. The following weekend we are staying downtown for one night and will be watching the Christmas lights parade. Then it will be my 35th birthday which I am absolutely dreading to me that means I am 5 years closer to being 40. I think I will have a hard time with that one well I know I will. I recently watched that movie “This is 40.” Yes I will be like her and will be celebrating my 38th birthday for several years. Four days after my birthday I will be doing my Rituxan which we all know that’s a party in its self. Which means I will not be feeling well for a couple weeks. The next thing on my schedule is my husband’s company Christmas party. Which means Eric and I will be wrapping about twenty gifts for the Christmas party gift raffle. Also squeezing in wrapping all the gifts for the kids and family members. I am hoping I will have time to do Christmas cookies with the kids. Started this tradition with Allen ever since he was a baby. Alana was not into it last year but I think this year she will be more into it. Well at least eating the frosting out of the bowl when I am not looking. Then before I know it will be Christmas. We are staying home this year for Christmas so the kids can enjoy playing with their toys.

Even though it will be a hectic time of the year, I am very thankful for the many blessing in my life such as my family. I think we all can to relate to that when it’s the holiday time we forget what matters the most sometimes.

 

 

Because…SCIENCE!

self-portrait-llcHello again! It’s so hard to believe there’s only a month and a half left of 2016 and then we will be welcoming a new year!

I am still recovering from being so sick over the summer, but am feeling better in terms of energy. I am still in a considerable amount of pain from RA and dreading the idea of having to confront that fact with my Rheumatologist next week. I was told that if the pain didn’t settle, I would likely have to add another medication into the mix. The problem is that the medication in question is an injectable. After having to give myself daily shots for 5 years when I was mis-diagnosed with MS, I am not keen on dealing with constant needles again. The other big deal is that the add-on med is chemo.  I’ve been through chemo before and it’s miserable. The thing is I really can’t go on with the level of pain I am currently in, so we’re going to have to figure this out. I intend to explore my options and see if there’s any way around having to do injections.

In the meantime, I am keeping busy-for the next three weeks I am going to be immersed in medicine from the other side. I am attending a day long MS/NMO ambassador’s annual session out at UBC this weekend. It’s a chance to learn about all the current research the MS Society of Canada is doing and we will also have the opportunity to tour the labs. I am excited about touring the labs because UBC does a lot of important research here in Canada and I know several of the researchers. Getting to peek behind the proverbial curtain will be both fun and interesting.

Next Friday, I am attending an all day meeting for the Association of Registered Nurses of BC’s patient advisory committee. I was invited to serve on this committee a couple months ago and this will be our first chance to meet everyone, set our agenda for the foreseeable future and elect a chairperson. I am looking forward to working will fellow health advocates to improve how healthcare is delivered in our province.

Next weekend is also UBC’s NMO Patient Information Day. It will be good to catch up on the latest in NMO research and clinical trials and to connect with our NMO community. We have a new clinical research coordinator for the CIRCLES study whom I look forward to meeting.

The first week of December, I will be flying out to Toronto at the invitation of the MS Society of Canada to speak to over 100 junior researchers about the importance of MS research. The event is called HEAR MS Day, which stands for Hope and Engagement through Accelerating Research in MS.  I just completed 2 terms as the Community Representative for British Columbia, serving as a lay reviewer for the grants competition and the MS Society of Canada felt my input would be valuable. I am very excited to be a part of this. I will also be attending the 4 day EndMS conference that follows. They are expecting over 250 researchers and health care providers from around the world to attend. There will be scientific presentations, trainee workshops, poster sessions and networking events. I am very much looking forward to contributing and learning.

I have always had a keen interest in medical science. When I was 5 years old, I wanted to be a forensic pathologist, (I know… I was a weird little kid. Clearly, I watched way too many episodes of “Quincy, ME.”) but  I would never in a million years have thought I would be so immersed in the world of medicine, research, education and advocacy the way I am now. I consider myself very right-brained, so all of this really is a departure from my wheelhouse. The thing that hooked me though is the learning-I am never happier than when I am being challenged to learn something new- I will immerse myself and soak up information like a sponge. The other big hook (and to me, the most important one) is the chance to make a difference. Someone I admire very much once said to find the thing you are passionate about and then pursue it with all your might. I am passionate about improving the human condition, especially when it comes to doing everything I can to help advocate for those of us living with NMO and MS. It is an honour and a privilege to be able to serve.

 

Before I sign off, just a quick reminder that UBC’s NMO Patient Information Day is coming up fast. For more information and to register, click here.

14
Nov 2016
POSTED BY Lelainia Lloyd
DISCUSSION 3 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.

back1back2

back3

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.

Washington D.C and Dr.Levy

Two weeks ago I had an Appointment with Dr. Michael Levy at John Hopkins. Since Eric and I were traveling all the way from Colorado we decided to Make a long weekend trip and see some of the Monuments in Washington D.C. It was my first time to the east coast and it has been over 10 years since Eric was there. We decided it would be best to leave the kids at home and enjoy a couple’s getaway.

 

Our flight left late Wednesday night and we flew into Dulles we arrived at 11:30 p.m. Time we got the rental car and drove to the hotel which was in Old town Alexandria in Virginia. It was 1:00 a.m. so we were exhausted. Thursday morning we slept in little and woke up and explored Old town for a while and had breakfast before heading into D.C. We decided to take the metro train into D.C so we didn’t have to worry about parking and traffic. We got off the train at the National Archives and walked through the National Mall heading to the Washington Monument. I couldn’t believe all the museums at the National Mall. You could spend weeks going through all the Smithsonian Malls and other museums. As we approached the Washington Memorial it was just incredible how tall it was and all the different people from around the world was just staring up to the top of it.

 

Next we walked down to the World War II monument that was very beautiful to see and peaceful. As we headed to the Lincoln memorial we walked right along the reflecting pool. Which is way bigger in person then what you see on TV. When we were at the bottom of the Lincoln memorial I was thinking how am I going to climb all these steps since my NMO Symptoms are starting to hurt from walking so much? I have been walking a ton and I didn’t want to burn myself out since we still want to go see the Vietnam Wall and the White House. When I slowly climbed the stairs to the Lincoln monument and reached the top it was just gorgeous to see! It was remarkable to see how big it is and seeing it on T.V is just not the same. The Lincoln memorial was my favorite memorial to see by far. Once we were done looking at it and reading all the stuff from Lincoln we sat on top of the steps and people watched. I just could not get over how many foreigners where there looking at our American History. The sad part that there were not very many Americans there looking at our history. I had to rest for little bit before we started to walk down all the steps.

 

The next memorial we looked at was the Vietnam wall that was very humbling to see. Just seeing all the names and all the flowers and gifts people leave there at the wall. After that we caught a cab to head over to the White house since I was getting worn down. It was kind of crazy getting out of the cab and having to walk to get close to the White House. Since you can longer drive on the street in front of the white house and the back of the white house. The have barricades up so you can’t even get close to the fence that surrounds the house. The secret Service guys are very on point and can be a little rude and kind of jumpy with people. We simply just walked all around the White house then I had to take a rest on the Southside of the lawn. So we could walk even more to get back to the train station and head back to Old Town. When we arrived back to Old Town we ate at a great Oyster bar called Hank’s Oyster’s I highly recommend checking it out if you are ever in that area. By time dinner was over we were wiped out and ready for bed since we had a 45-minute drive to Johns Hopkins in the morning and I needed to be there at 9:30 a.m.

 

Friday morning bright and early with a Starbucks in my hand we headed off to Baltimore to John Hopkins to see Dr. Levy. Eric was worried that traffic would be very bad and would take awhile to get there. We made good timing arriving at 9:00a.m. I have always enjoyed Dr.Levy I have seen and listen to him speak at Guthy Jackson Patient Day for seven years. I have always wanted to fly out and go see him and I was thrilled I got that opportunity, Dr. Levy and I spent a over an hour going through my NMO history and what issues I would like to address. He would like to switch some medications around and do some blood tests and follow up in a few weeks. Since I have been diagnosed for 8 years there was a lot of information that needs to be talked about. Plus he wants to look at my MRI’s when I was first diagnosed to my latest MRI’S to see how my lesions are doing.

 

After leaving the Hospital we drove around Baltimore a little bit then we went to a crab place that had really good reviews for crab. Eric wanted crabs right out of the bucket. Like when he lived in Virginia Beach. So that was a nice lunch. We decided to take a scenic route back to D.C I wanted to check out Georgetown. LOL it seemed like a good idea but it kind of a pain but we made it to Georgetown the next tricky part was finding parking. It took us awhile but Eric got it done. I wanted to go shopping and stop at my favorite cupcake store Sprinkles! If anyone really knows me I am very addictive to these cupcakes. If I am visiting a city and they have Sprinkle store I will be most defiantly will be stopping by and buying cupcakes. After shopping for a while we headed back to the hotel and rested for a bit and went to a late dinner at a fabulous Southern food restaurant called Hen’s Quarters. It was the best-fried chicken I have had in a long time. We took a nice stroll down King Street after dinner and headed back to hotel cause we were pretty beat.

 

Saturday was a very special day we decided to spend the day at Arlington Cemetery. I wanted to see the tomb of the unknown solider and the changing of the guard. But also were the Kennedy’s are buried. Also I wanted to spend our last day at a place that was not going to be too crowded with people and was going to be not so noisy and just spend a quite day getting ready to go back to reality. I loved watching the changing of the guard and over all seeing the cemetery and seeing where JFK is buried. We spent about 4 hours walking around the cemetery. We headed back to hotel around 3 and went to a local bar and had a few drinks and went shopping a little bit then off to Hank Oyster Bar again because they had the best crab cake we found during our vacation. We enjoyed our last romantic dinner. Since we had an early flight on Sunday Morning.

Now that I am back home I am still waiting to hear back about the blood tests and on Friday I have an Appointment with my neurologist about what Dr.Levy said and the new medications I Need to try. So I will keep you all posted!

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

img_7027 img_6980 img_6929 img_6910 img_6893 img_6862img_0152 img_6848img_6859 img_6844 img_6831 img_6828 img_6817img_6787  img_6765 img_6764 erin-at-lincoln-monument erin-at-washington-monument

 

 

 

 

 

5th Annual UBC NMO Patient Day

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We would like to invite you to join us for this FREE event open to patients, family members, friends, caregivers, student/trainees or anyone interested in learning more about NMO.

Date: Saturday, November 26th, 2016.

Time: 10:00 AM – 3:00 PM PST.

Location: the Djavad Mowafaghian Centre for Brain Health located at 2215 Wesbrook Mall, adjacent to UBC Hospital along Wesbrook Mall on the UBC Point Grey campus.

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

Learning Outcomes of NMO Day:

  • Today’s NMO overview: Introduction to NMO, Diagnosis and Symptoms, Treatment Options
  • New NMO research: What is being done worldwide and here in BC
  • How can you get involved
  • UBC NMO Clinic/Research Program: Update and vision for the future

 

24
Oct 2016
POSTED BY Lelainia Lloyd
DISCUSSION No Comments
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