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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Season 4 of Four Senses, my cooking show, currently airs on AMI TV

Since winning MasterChef U.S. Season 3 in 2012, I’ve gone on to co-host my own cooking show. Our studio shoot is in Toronto, which gives me the chance to visit with Jenna at least once a year.

Something of which a lot of people may not be aware is that a TV show’s shoot schedule is often highly intense and squeezed in to a short amount of time. One season of Four Senses, for example, is thirteen 30-minute episodes. We shoot two episodes a day (each one taking about 4 hours to shoot), and we film them all in seven days straight. The reason for this is it’s often very expensive to rent studio space and film equipment, plus everyone on cast and crew are contractors that have other work projects scheduled, so a producer can only snag people for X amount of time.

Many people I meet assume we are shooting each episode the day before it airs, or sometimes, people even think it’s live television (like in the case of MasterChef, people would meet me in the street while it was airing and be confused why I wasn’t in the kitchen that day).

There’s a whole different world called “television.”

I can’t believe it’s been five years since my season of MasterChef shot and aired, and four years since I started Four Senses, a cooking show with an accessible twist. Season 4 is currently airing on AMI TV in Canada on Thursdays at 7:30 PM ET/PT, but if you miss an episode or don’t live in Canada, you can catch the episodes online at AMI’s Four Senses website.

Happy watching and cooking!

16
Jan 2017
POSTED BY Christine
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Patient Profile: Courtney Engel

In this week’s Patient Profile we want to highlight Courtney Engel. Many of us may have also met her Mom, Christine Kryshak, at NMO (neuromyelitis optica) patient days in the past. Courtney is a Mom herself, a music teacher, a wife and also a patient advocate. She shared her personal thoughts on vision loss, music and relationships.

  1. NMO stats (diagnosed since, number of attacks, treatment centre, age if you’ll disclose).

In August of 2008, I started losing vision in my left eye.  It began as a single dark line at the top of my vision field, but as time progressed, the darkness increased.  It was like someone was pulling a shade down on my eye sight.  I went to my eye doctor & then to an eye specialist in my hometown of Wausau, WI.  They diagnosed it as a “simple” case of optic neuritis & told me that my vision would return on its own in time, as I was still young.  (I was 28 at the time.)  A month went by with no improvement.  The vision in my left eye went completely dark.

My mom was able to get me a referral to the Mayo Clinic in Rochester that November.  After several appointments, I was diagnosed with NMO.  I received the diagnosis via a phone call while at work.  The neurologist made it sound like it was a common thing & that it wasn’t a big deal.  Boy was he wrong!  Maybe he just didn’t want me to panic, but I feel that he was dishonest with me.

I began plasmapheresis at Mayo in January of 2009  in hopes of recovering some of my left-eye vision loss.  Nothing came back, and I returned home.

My next major NMO attack occurred during a 6th grade orchestra concert I was directing. This would be early February of 2009.   I was up on stage, and I noticed that the stage lights were dimming.  The music became a bit blurrier.  I couldn’t panic, as I had 60+ students on stage that I was responsible for.  However, when I woke up the next morning, my world was in complete darkness.  I had lost all vision in my right eye now, too.

More plasmapheresis.  This time I did it more locally, but the instructions came from Mayo.  I was treated at the Marshfield Clinic in Marshfield, WI.  Having gone through a month of treatment, I did manage to regain most of my right-eye vision.  I was about a week away from returning to work when another NMO attack occurred, and my world went black once more.  I completed another few weeks of plasmapheresis at Marshfield, but this time only some of my right-eye vision returned.

Since that awful winter of 2009, I’ve only experienced minor vision loss in the right-eye on two separate occasions – after receiving my first Rituxan treatment (this was before the doctors knew we should be doing solumedryl prior to the treatment) and again after I had a bad case of the flu.  I explain to people that my vision is like looking through a frosted window.  I can see colors & outlines, but everything in between is pretty blurry.  I cannot read without the use of magnification equipment, and I no longer drive.

I have been very blessed to have had no major NMO attacks for the past seven years.  The doctors now feel that I have the NMO spectrum disorder, as I only get NMO attacks that affect my vision.  I do experience the other NMO symptoms often, though – fatigue, body aches, headaches, etc.  I undergo IVIg infusions every four months to help boost my immune system.  I also get treated with Rituxan every six months.  These treatments seem to be doing the trick – – at least for now.

courtney

  1. We know you’re a school teacher. Tell us about what you do.

I am a full-time orchestra teacher at the middle school level.  I have a 6th grade, 7th grade, 8th grade, & auditioned advanced ensemble to direct.  There are about 160 students enrolled in my program.  It’s an extremely busy but fulfilling occupation.  The 6th graders are beginners, so I am starting them from no knowledge of playing a stringed instrument.  I teach them in small group settings & in large group rehearsals.  There are also about six concerts each school year.  I find concerts to be a bit stressful.  This job is one of the few teaching jobs that puts students on the stage to display what they have learned.

I also teach three private violin students on my weekends.  I really enjoy doing the private lessons, as this gives me the opportunity to work with older students & more challenging repertoire.

  1. Music has such healing properties. How has it helped you since your NMO diagnosis?

Music has been both healing & detrimental to my healing process.  I began playing violin when I was four years old.  By the time I was in college, I had travelled to Vancouver, Cape Cod, Austria, & France to participate in chamber music experiences.  During my first few years of teaching, I was a member of a semi-professional symphony orchestra.  I frequently participated in pit orchestras for community musicals, too.  But since I lost my vision, the performing has pretty much come to a halt.  I have not, yet, found assistive equipment which allows me to read & scroll enlarged music while playing the violin at the same time.  I have a CCTV which allows me to magnify my music, but after each measure, I need to put down my violin & scroll the music over with my hand.  This doesn’t give me the satisfaction of continuous play.  Anything I want to play on my violin needs to be memorized.  As violin playing was such a huge part of my life (pretty much for my entire existence), this left a huge hold in me, because it was suddenly taken away.

During the summer of 2010, I decided to put on a solo violin recital to help raise money for NMO.  Since I had summer vacation (& this was before my son was born), I had lots of time to practice violin.  I spent about three hours each day working on the repertoire, which I found extremely fulfilling for my soul.  I poured my heart into my notes, & I found it to be therapeutic.  The recital occurred in August of 2010.  There are a few video clips of my performance on my FB page.  I was overwhelmed by the number of people who came to listen to me perform & to support me in my cause.  I managed to raise $13,000 which was donated for NMO research.

I am hoping to do another violin recital this coming summer.  I am already looking forward to working on the music.

  1. You’re a working mom who also lives with NMO. How do you balance it all, especially on bad days?

I have a four-year-old son named Caleb.  He is the best thing that has ever happened to me.  Caleb is a ball of non-stop energy.  It’s becoming more & more difficult to keep up with him.  I miss those baby days when I could just sit there and snuggle!

I have an incredibly supportive and understanding husband.  So when he’s around on “bad days,” I can always rely on him to take over while I recuperate.  When I find myself alone on “bad days,” we try to do quiet activities, such as reading books, doing puzzles, or watching movies.  Caleb is still awfully squirmy and doesn’t like to sit still for too long.  However, he is also getting old enough to understand that I have these rough days & that I need my rest.  A lot of the time he is content with me resting on the couch & watching him play on his own.  Though, it is heartbreaking when he is in tears or upset, because I can’t run around with him.

  1. Having a successful pregnancy while having NMO is a hot topic in our community. Tell us about your experience and give us your advice.

I wouldn’t exactly say my pregnancy experience was successful.  It was a very difficult journey for me, & the doctors are still not sure if this was due to NMO or other factors.  During my first pregnancy, I had a miscarriage at 24 weeks.  My baby girl had some heart issues & my placenta never grew to the necessary size to nourish my baby.  I was a complete mess after the loss of my baby girl.

A year later we were blessed with our son, Caleb.  During the first trimester, everything was going successfully.  I had been put on Lovonox injections to assist with growth of the placenta & that was doing the trick.  It was a super exciting time in my life.  Many of my NMO symptoms dissipated while pregnant – I experienced less body aches and headaches.  My vision also seemed to have slightly improved.

Everything was fine up until my sixth month of pregnancy.  I contracted enormous respiratory issues which turned out to be pneumonia that just wouldn’t go away.  I was coughing non-stop day and night.  My ribs were fracturing from all of the aggressive coughing. One of my x-rays showed that I had 13 broken ribs at the same time.  Broken ribs are painful enough.  Add a pregnancy and a kicking baby was excruciating! Obviously, I couldn’t take any pain medication, so I just had to suffer it out.  Ice packs helped a tiny bit.  After eight weeks of pneumonia, my OB decided it was best to have an emergency C-section.  A few days after my C-section, I completed a Rituxan treatment.  I was told by doctors that you are most prone to NMO attacks right after delivering, and I certainly didn’t want to risk that!

Caleb was born at 31 weeks.  He was a healthy baby.  He stayed in the NICU for five and a half weeks, but this was mostly due to the fact that he was so small.  He was born at 2.11 lbs.  He had to reach five pounds, be able to feed off of a bottle, and pass the car seat test, before we were able to take him home.  So, we were just waiting for him to grow.  We are blessed that Caleb continues to be a normal, healthy toddler.

My advice to pregnant NMO patients or those who want to become pregnant is to seek out a great network of doctors who will work together.  My neurologist at Mayo (Dr. Pittock) and my OB (Dr. Mascola) were constantly in contact with each other about my pregnancy.  My OB was a specialist in high-risk pregnancies, & I therefore had more examinations than the average pregnant woman.  This turned out to be an advantage, as I had many opportunities to see my baby boy through ultrasounds.

I also feel that it was important for me to speak with my doctor before attempting my pregnancy.  My neurologist told me that I should get a final Rituxan treatment and then wait six weeks before attempting.  At this time, I was told that it was not ideal to be treated with Rituxan while pregnant, so we were building up my defense against an NMO attack during the pregnancy.  I was also not on IVIg at this point.  I did, however, take oral prednisone, which does not cross through to the baby.  I believe following this regiment assisted in keeping me NMO-attack-free while pregnant.  Everyone’s health works differently, & it is critical to follow your doctor’s instructions.  I am grateful that I had a strong team between my neurologist and my OB.

  1. Personal relationships can be tough in the best of circumstances. What advice do you have for NMO patients to manage relationships of all types (love, children, family, friends)?

I married my husband, Jake, before I got sick with NMO.  We were married for two months before my first optic neuritis attack.  I feel like we actually grew closer, due to NMO.  We know we need to be strong for each other & for our son.  When I was in undergoing my plasmapheresis, Jake stayed by my side as often as he could.  When I lost my vision completely, he would read to me.  He read the complete Twilight series & Hunger Games series aloud to me during treatments.  He was not a fan of Twilight at all, but he did it for me, & I love him even more for doing that!  To this day, he continues to read aloud to me when I am hospitalized or sick at home.  I love spending this quality time together.  Jake also knows me well enough to not even have to ask how I’m feeling.  He can often detect if it’s a good day or a bad day by observing my behavior.  When it’s a bad day, I can always count on him to step up & take over the extras.

I really don’t know where I’d be today, if I hadn’t met Jake prior to NMO.  I think it would be very scary to put myself out there knowing that at some point I would have to disclose my disease & my visual impairment.  I would worry if I would be accepted with those flaws & how supportive that person would be.  Words cannot express how thankful I am for the loving & supportive husband I have.

My friends & family are concerned about my health, but to be honest, they haven’t been as supportive as I would have liked them to be.  My Mom has been amazing & has been by my side through everything.  However, my health has also made many people feel uncomfortable.  They didn’t know how to deal with what I was going through.  They didn’t know what to say when they saw me or what to do to make my life easier – – so they didn’t do anything.  They thought that by leaving me alone, I was finding time to recover & rest.  However, I saw it as abandonment, and this is something I am still trying to get over with to this day.

I shouldn’t say all of my friends and relatives are like this.  I do have a few who have been extremely supportive, too. My Mom is amazing. She has been with me every step of the way. She’s the one who helped me get diagnosed correctly with the Mayo referral. She goes to all of my appointments and most of my treatments as well. I could not have gotten through all of this without her!

  1. What keeps you personally motivated and what keeps you fighting?

My son.  I live for my son.  Even now while thinking about him and the joys he adds to my life is bringing tears to my eyes.  I love the way he hugs me.  I love that he is a constant chatterbox.  I love that he puts plastic cups over his ears in the bathtub when I’m washing his hair.  I love when he says “Mama.”  I love watching him create traffic jams with his cars and build car dealerships with his legos.  I just can’t get enough of this kid!

My teaching is also a huge motivator in my life.  I am very invested in my job & enjoy going in to work every single day (except for in-services!)  Music is and always will be my passion & to have the opportunity to share this with all of my students is a blessing.

  1. Tell us a moment when NMO embarrassed you (if ever).

I get frustrated with my vision loss.  I have to have my husband double check my make up –  that I didn’t leave smudges, etc.  I struggle telling the difference between colors, such as navy blue & black.  I once went to school with navy blue pants on that didn’t go with my top at all.  Unfortunately, it wasn’t mismatch day, either.  If I have a food stain or toothpaste on my clothing, I am unaware & therefore walk around like that all day.  On school field trips, I might walk into a door or stumble on nothing in front of my students.  I think that’s the worst part – is fumbling due to vision in front of my students.

  1. What do you think needs to be the next steps in finding a cure for NMO?

At my last Mayo appointment, I asked about the advances in NMO research.  It sounded like researchers are more interested in finding better maintenance treatments than finding a cure.  I was a bit disheartened by this information.  I think that the doctors need to collaborate more on the global level.  I often hear new research ideas or treatments from the UK & other countries & wonder how often this information is shared with my own doctors.  This is a global issue that can be solved with many minds put together.  I will also continue doing my part in making people aware of the need for an NMO cure.

  1. Finish this sentence. Courtney is _____________.

a wife, a mother, a teacher, a musician – I do not let NMO define who I am.

02
Jan 2017
POSTED BY Jenna
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Merry Christmas and Happy New Year!

To each and every one of you in our NMO (neuromyelitis optica) family we wish you much love, happiness and mostly good health as we all get through the busy holiday season and start off 2017.

Over the year we’ve enjoyed sharing tales of our travels, patient advocacy, career successes, and our challenging health situations. Thank you for your emails, comments, Facebook messages, but most importantly your support.

In the coming year, NMODiaries plans to include more content that we know has been popular with our readers.

  • We’ll showcase more patient and advocate profiles so our readers discover others that we can all identify with.
  • We’ll return back to more vlogs so we can share more of what our day to day looks like.
  • We’ll investigate more alternative health practices that we know other patients want to consider.

The holiday season can be cold and stressful, which might be why we hear of a lot more patients flaring during this time of year. Take care of yourselves, be patient and kind to what you need to stay healthy.

With much love,

Jenna, Erin, Christine, and Lelainia

27
Dec 2016
POSTED BY Jenna
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Patient Profile: Grace Mitchell

We are starting a series titled, Patient Profile, to highlight other ambitious individuals living with NMO (neuromyelitis optica). We want to share their stories as examples of how we’re in this together.

Today we feature Grace Mitchell, which many of you know as our Facebook patient page moderator.

1. NMO stats (diagnosed since, number of attacks, treatment centre, age if you’ll disclose).

I first became ill in April of 2005, when I was 52 years old.  I had gone  to bed one evening after work, and awoke the next morning to find myself paralyzed and without bowel or bladder control.  I was taken to the local hospital, where lab tests and an MRI were performed.  Unfortunately the MRI was only of the lumbar spine (my very large lesion was in the thoracic spine)  and the on call physician was unable to find a cause for my loss of function, informing me that it was likely hysterical paralysis caused by conversion disorder.  By the next morning the paralysis had moved up my chest, and I was ambulanced to the University of Pittsburgh Medical Center, where I was initially given a diagnosis of Idiopathic Transverse Myelitis.  After several weeks in the hospital and a subsequent stay in a rehab facility, I was finally able to come home.  Roughly eight weeks out of rehab, I again found myself paralyzed and was sent back to the University of Pittsburgh, at which time my case was handed over to Dr. Rock Heyman, Chief Division of Neuroimmunology/MS, who diagnosed me via the Mayo Clinic’s NMO IgG test.  He’s been my neurologist since that time, and has gone above and beyond for me.

2. You’re known as a leader in the NMO community. When did you first get involved and how?

At the time of my diagnosis, there were only about 800 documented cases of NMO in the US, so I immediately set out looking for other patients.  I was lucky enough to be contacted by Tim Mulvihill whose partner had also been very recently diagnosed.  We spoke on the phone for about six hours that first night, and by the end of that first phone call had decided to start an advocacy group for fellow patients.  We didn’t want it to be simply a support site, rather we wanted to actively and tangibly impact the patient experience in a positive way.  The only way to do that was to first educate ourselves about the disease, so we dove into what scant research there was available, and also started contacting physicians and members of the research community.  I am not  exaggerating whenever I say that our lives immediately became as busy as Grand Central Station.   The patient response was incredible.

3. Because of the nature of your work as a moderator we know you’ve become close to so many patients. Knowing about their individual hardships with NMO, how do you stay positive and impartial on a daily basis?

It’s so very difficult to remain in a positive frame of mind when dealing with fellow patients who are often very frightened, and sadly, profoundly disabled.  Because I have worked so hard to build my credibility with the wonderful researchers of this disease, and because they in turn have always been so kind to me, I work very hard to handle myself in a professional manner, despite not being a professional.  That being said, I often find myself in tears after speaking with a fellow patient who is desperate for help.  It’s a very emotional experience.

4. We want to know more about who Grace is. Tell us about your day to day activities including your hardships with NMO.

My personal identity has become so entwined with NMO that it’s hard to see where the disease ends, and I begin.  It’s so important for me to keep my mind vital and alert, so in my spare time I read anything and everything that I can get my hands on.  Science, history, politics, and biography, books and articles are my personal favorites though I do read a bit of fiction (it’s a wonderful escape).  I also enjoy listening to music in my spare time, with blues (particularly old Delta blues) and classic rock being my favorites.  Physical activities are difficult for me these days due to the intense fatigue that often comes along with NMO.  Just an outing to the grocery store wears me out and puts me to bed, so chilling at home with a good book and my cat has become my favorite activity, with the exception of spending time with my beautiful little 4 year old granddaughter.

grace

5. Personal relationships can be tough in the best of circumstances. What advice do you have for NMO patients to manage relationships of all types (love, children, as a grandparent, family, friends)?

Managing any type of relationship is difficult when also dealing with a chronic disease. Often, family, friends, and significant others, don’t understand the physical limitations that accompany an NMO diagnosis. Whenever I say that I am tired, it’s not the same kind of tiredness and fatigue that a healthy person might experience after putting in a hard day at work, rather it’s an overwhelming feeling of total exhaustion that isn’t necessarily remedied with a nap, or even a full night’s sleep. My advice to other patients is to give as much as they can to their relationships, but to know their personal limits. Another important thing to remember is that as patients, we can’t expect others to *own* our illness. The world doesn’t stop just because we are ill. Most of our family and friends are sincere in their efforts to understand our situations, but because they have not experienced it themselves their understanding is limited, and that’s not their fault.  Sometimes, we as patients need to take a step back and realize that the world does not revolve around us simply because we have a chronic illness.  Does that sound harsh? Maybe, but it’s the truth as I know it.

6. What keeps you personally motivated and what keeps you fighting?

That’s an easy one to answer, my desire to be of help to my fellow patients.  Whenever it’s all said and done, we’re all in this together.

7. Tell us a moment when NMO embarrassed you (if ever).

You know, despite NMO being a difficult disease to deal with, it does have it’s humorous moments. Shortly after my second bad attack whenever I became able to walk a bit in my walker, I got a ride to my local pharmacy to drop off some prescriptions.  As I exited the car, I got that painful burning rush that always precedes a bout of tonic spasms, and before I knew it the pain hit me and I was lying on the pavement. Now, if you’ve ever experienced tonic spasms, you’re fully aware that they’re not the old garden variety charley horse, rather they’re screaming pain, and I do mean screaming and I WAS screaming.  So there I was, lying there on the sidewalk with my shoe off, my right leg all bent askew, my arms stiff as boards, my right ear pulled down to my shoulder, my mouth wide open, and all the while I was screaming for help.  Several pedestrians came and stood around me, but not one would intervene (I think I probably scared them to death).  Finally, out of the pharmacy marched my very favorite cashier who told the people to move along that there was nothing to see there, and scooped me up and helped me limp into the store.  Talk about being embarrassed!

8. In your opinion, what needs to change about the medical system, the NMO community and the pharmaceutical industry?

Whenever it comes to our medical system, I think that the biggest issue for NMO patients is the fact that most general neurologists are not educated about the disease.  If you’re lucky like me, you’re seen at a large teaching and researching facility, but unfortunately that’s not feasible for many patients who end up having to depend on neurologists in rural areas, and to utilize facilities that are less than stellar.  As for the pharmaceutical industry, they are both friend and foe.  I hear patients complain all of the time saying that the pharmaceutical companies have cures that they don’t want to share due to financial gain.  I do not think that’s the case.  Patients don’t understand the enormous amount of time and money that goes into developing a drug, nor do they understand the red tape that must be waded through to get a drug to clinical trial.  If trial results are satisfactory, the next step is getting FDA approval and that’s not something that’s instantaneous, in fact it can take years.  Then there is the fact that some of the drugs that we use are exorbitantly expensive and the insurance companies are reluctant to cover them, meaning that  patients must jump through hoops and are often denied several times before the treatment is finally approved by the insurance company—if it is approved at all.  On the other hand, if not for these pharmaceuticals many of us would be in much worse shape than we currently are.  It’s a case of six of one and a half dozen of the other.

9. What do you think should be the next steps in finding a cure for NMO?

As for one day finding a cure, my feeling is that the cure will come via the amazing research that is currently being  conducted concerning tolerization.  The whole concept is huge for NMO research.  While it’s unlikely to occur during my lifetime (I’m not a spring chicken anymore), I do believe that it will happen, and that will be an amazing day.

10. Finish this sentence; Grace is ___________.

Grace is determined.

05
Dec 2016
POSTED BY Jenna
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Support NMO research today on #GivingTuesday

Thursday was Thanksgiving. Then we had Black Friday, followed by Cyber Monday. Today, instead of overeating and overspending in the spirit of gluttony and consumerism, why not donate to a good cause in the spirit of selfless giving?

#GivingTuesday is your chance to make a difference this holiday season. It’s a way to remember how blessed we are by supporting a cause that could benefit from our donations, whether in time or money.

Of course, since this is a blog about Neuromyelitis Optica/NMO, I urge you to support the Guthy Jackson Charitable Foundation this #GivingTuesday. All of the proceeds donated to the GJCF will be used to fund research for treatment and an eventual cure for this debilitating disease that affects all of us here at NMO Diaries.

To support the effort today, please visit the Guthy Jackson Foundation #GivingTuesday page, and be sure to reference #GivingTuesday with your donation.

Thank you from all of us at NMO Diaries, and spread the word!

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.