Introducing our new blogger – Lelainia Lloyd

Several years ago Mike (my then fiancé) and I found ourselves at the Guthy-Jackson Foundation Patient Day. After asking a question, Erin found me on one of the breaks because she had a similar question. We started talking and also met Christine in the lobby bar. Before soon, the 6 of us (spouses and us) found ourselves at a sushi dinner. Call it fate or by chance, but NMO Diaries was born over that shared meal.

This blog was a form of therapy for each of us but also a way to give back to the NMO community. You see, several years ago, if one were to Google neuromyelitis optica, it offered a frightening tale that our lives would be over. Determined to not have this disease defeat us, we wanted to share our lives and how we planned to move forward.

Fast forward to today, I’m very proud to say that each of our lives has developed further than any of us would have imagined. There’s so much more each of us wants to do and now we see it as a possibility because of the love and support we’ve received from the NMO community, our families and our friends.

That being said, it’s time for us to include a new blogger to join us permanently on NMO Diaries. I’m very pleased to introduce each and every one of you to Lelainia Lloyd. Based in British Columbia, Canada, Lelainia is just a few years older than us, is very involved with the MS Society and will offer her experiences as a new perspective. To learn more about Lelainia’s NMO journey check out her “About Us” link here.

Thanks for joining us on NMO Diaries. We hope we continue to inspire and motivate each other to live life to its fullest.

MOMpreneur

Hi everyone.

I was featured in a blog post for Canadian entrepreneurs who are also moms, affectionately called Mompreneurs. I think it’s a funny term ’cause I don’t think as either being a job, let alone a blended job. I’m passionate about both my family and my company. Nonetheless, folks out there think it’s kinda cool how I balance my life so they did a write up here:

http://www.fslocal.com/blog/mompreneur-jennifer-van-amerom-culture-company-inc/

Sidenote: I trade professionally under my maiden name still so don’t get confused. And of course, I had to do a shout out to the world and drop neuromyelitis optica ’cause every chance we get to educate more about the disease the better for us all.

Taking Charge of My Health

 

When I remember how I felt this time last year I can say that I have come a long way. I have gotten off a lot of medication, which has helped me lose over 45 pounds. Last October I came to the hard realization I was over medicating myself and on the wrong medication. After consulting with my doctors we decided to take me off Lyrica and try Gabapentin instead. A month later I lost 20 lbs! This motivated me to lose   more weight so I evaluated my diet and acknowledged that I wasn’t getting enough exercise.

 

Over the last 2 years at the Guthy-Jackson Patient Day for neuromyelitis optica I listened to Elizabeth Yarnell’s talk on nutrition and if certain foods were contributing to our poor health. I finally decided to call her and see what she had to offer since losing weight was important for me and for my family. The first step was a parasite cleanse that lasted 20 days. It was very simple and easy to do. Next, Elizabeth had me draw blood to determine what foods made me more inflamed. Then we tested my urine for 24 hours to see how I digested food. After a week waiting for the results Elizabeth called me for a 2 hour phone conversation explaining my results and a plan.

I couldn’t believe what I learned! I was eating so many wrong foods that were making me more inflamed. For 2 weeks I was on a strict diet and could hardly eat anything. That was tough. But after that we started introducing certain foods again. I’m 4 months into the program and I’ve lost another 25 lbs. Elizabeth has totally opened my eyes about what I should be eating. All of my family and friends keep telling me that they can’t believe how healthy I look. They say I am glowing, they can’t believe how much weight I have lost and that I don’t have that bloated look anymore.

 

I am also working a personal trainer at the gym 2-3 times a week and I do Pilates twice a week. I am 23 lbs away from my goal weight, which was where I was before I was pregnant with Allen. My goal is to lose the last 23 pounds by June 25. My ultimate goal is get back down to my college weight in the next year or so. Between Elizabeth and my personal trainer I think I can do this.

 

Meltdowns are necessary

I love my friends dearly. In a lot of ways they are my family that I get to choose in this lifetime. The friends I’m closest with don’t judge me, they are my cheerleaders and are always there to listen to me. My friends are also very respectful that I’m busy so they’re constantly apologizing when they need to rely on me. That disappoints me because I always hope my relationships to be a two-way street.
Friends are there to help each other through meltdowns. I’m talking about those meltdowns where a good friend asks you how things are going and you start to tell them what’s been going on in your life and suddenly you’re rambling and the stuff that’s just been in your head comes tumbling out and next thing you know you’re in tears and feeling like a complete disaster. Phew! Yes, those kind of meltdowns.
To answer your question, no, I did not have a major meltdown recently but in a way my body was telling me that I was close to a crisis point. I started suffering from vertigo and it didn’t go away for several days. When I finally went for medical help it was determined that it wasn’t a NMO related symptom but rather a sign of serious dehydration and exhaustion. (I’m still suffering from the vertigo but it’s slowly improving.)
Although I don’t enjoy seeing my friends go through difficult times, truthfully it does make me feel less alone knowing that others have meltdowns, exhaustion and stressed out lives. A few excerpts of the lives of my friends:
· One friend is at a crisis point because she’s unhappy with her job and constantly feels discouraged that she’s not landing roles that she’s clearly overqualified for
· Another friend has been taking care of her ailing and elderly father, putting strain on her marriage and her now non-existent career
· Yet another is madly in love with what I think is her soul mate (if such a thing exists) but he lives in another town and neither wants to relocate to be together
· And a good friend is struggling with the decision to grow her family (she’s always wanted to raise a big family) but her compromising health makes this difficult

In my mind I’d deal with each of these situations differently because it’s easier to have an opinion from the outside but that’s not what my friends are asking for. As I’m sure they would deal with my life problems differently too what we’re asking of each other is a shoulder to cry on, someone to listen and just support. I always think to those dark first days of NMO when I was scared, unable to walk and completely confused in a hospital bed – how so many of my friends were just there over the phone, in person pushing my wheelchair and still slinging mud at me like before. Without my friends, without our meltdowns, this would be such a lonely world. So the next time you feel you’re over reacting or things just start spilling out, just embrace it and know your friends love you as much as you do.

Attempting to change my mind set

I’m well aware that stress is a factor. As a NMO patient I’ve had that tough conversation about doing too much and over extending myself more times than ­­­­­I’ve Googled someone. But I’ve never walked away from any of those conversations convinced that my plate is too full. Logically speaking, in my head there have been times that I could have admitted I was possibly over capacity. Yet in my heart I have always believed that the universe wouldn’t throw anything at me that I couldn’t handle. Maybe it’s maturity or maybe being a mother or maybe a phobia of another long term visit to the hospital but after last week I’m finally ready to admit that sure, I might have bitten off more than I can chew and sure, I could re-evaluate how I handle stress. Maybe.

After a whirlwind week of work (where every day is completely different as an entrepreneur), cramming for a midterm exam (I’m also working towards my Marketing degree) and feeling completely inadequate as a mother and a wife (my floors were so dirty), I jammed in time with friends and a routine MRI exam. Crazy, right? Prioritizing my tasks would make things easier but when everything needs my attention yesterday, what takes precedence?
It was a scheduled routine/we need to do a check MRI on Saturday night and since I’m not really the type to become claustrophobic I didn’t put much thought to it. Despite how painful I found the machine (not being able to move for over an hour on a hard metal table, laying on my damaged spine) what I found the most unpleasant was being still long enough to be left with my thoughts.
That’s when I’m forced to answer those nagging questions in my head I try to ignore by staying busy.

Am I a good mother and wife? I could do better.
Did I over extend our family starting this business? Probably. Too late now.
Am I great enough in my industry to be truly successful? Looks like it but who really knows?
Did I pass that exam I just wrote? Gosh, I hope so.
Do I get enough sleep/food/rest to manage my NMO? Absolutely not, but something has to give.
Am I managing my stress appropriately? Not at all. That’s an epic fail.
What am I going to do to change all this? I HAVE NO IDEA! WHAT AM I GOING TO DO???!!

If you ask anyone who knows me well they’d all tell you that I do my best work when I’m on the verge of self-destruction. You see, that’s how I was conditioned as a child. Every day was a battle of survival and when things got tough there were 2 options in life: one either gives in and plays the victim, or you dig real deep and fight harder. I watched those I love so much always play the victim and it killed (ok, it still kills me) to know they have the potential to do so much more. To compensate, I’m never satisfied with what I have. I always feel like I can do better, like I can do more. So, what I should have been thinking was:

I’m so blessed to have a great little girl and to be so loved and supported by my husband.
I’m working really hard to make sure my company is successful.
I did the best I could on that exam.
I will make conscience decisions about what I eat, getting enough sleep, and taking me time.
I will ask for help more often.

I think the secret to staying healthy (as much as NMO will allow) is to change my state of mind. My greatest weakness is my insecurities and my constant desire to take on more. If I can be conscience of those weaknesses I’ll be moving in the right direction. Maybe.

27
Feb 2014
POSTED BY Jenna
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Q&A with John: Reflections on NMO Love

John and I don’t really celebrate Valentine’s Day. Tonight, while couples flock to romantic restaurants across the nation, the hubster and I will be at the gym, making fun of each other for crying while lifting weights. In fact, sometimes I think he knew I was the one only after I’d said V-Day was a marketing ploy for American consumerism. But I digress…I will still try to keep this post on topic.

So, in an attempt to somewhat give nod to V-Day by reflecting on our relationship, I asked John a few questions.

Christine Ha: Who are you?
John Suh: I am a Korean-American, born and raised in Houston, Texas. Lover of technology and an entrepreneur enthusiast.

CH: What made you pursue the relationship with me despite knowing I had NMO and vision problems?
JS: The first time I met you, you had this charisma. I knew you were intelligent, very cute, and had great humor. I knew pursuing you, I would also be facing challenges that I’ve never had to deal with. I’ve never met anyone with vision impairment, so I never knew how to guide someone walking, eating, etc. But the more I got to know you, I knew that you were someone special. Even early on before all the Masterchef celebrity status, I told you that I knew there were big plans for you, that you were going to be something big!

CH: What does it mean to be married to someone with NMO? To be his/her caretaker?
JS: It means you need patience.

CH: What were some of the most difficult times you’ve had in the relationship when it came to NMO and vision impairment?
JS: Anytime you had an attack, I felt powerless. As a partner, you want to do whatever you can to help your significant other when they’re in trouble. When you had your NMO attacks, I felt lost. I admit that I questioned myself. Can I really be with someone that has health issues for the rest of my life?

CH: What do you enjoy about our marriage? Are there any silver linings to being married to someone with NMO and vision loss?
JS: No. only gold nuggets. I enjoy that we both love food.

CH: What do you wish you could change about your life with me?
JS: My one wish would be for us to have more time to travel and experience the world together.

CH: What are you most thankful for in your life with me?
JS: I am most thankful for having someone that’s so compatible with someone like me. People say that you’re like a puzzle piece looking for your counter part that fits you. And I imagine my puzzle piece to look jagged and rough but yet I’ve found my counter piece. I’m also thankful that we’re always learning from each other. Your always there to correct my grammar, and I’m always around to point out the metaphors in movies.

CH: Do you have any advice for people who know or love someone with NMO and/or vision loss?
JS: Just do it. Life is too short to miss out on the amazing journey you could be having. There will be ups and downs, but in between it all it’s all gravy. And I love gravy.

CH: What have the last 2 years been like with my leaving to tape “MasterChef” and then all that followed? What is it like to have a celebrity as a wife?
JS: Nothing has really changed for me personally. We definitely travel and get to experience things like taping shows, chef tastings, etc. Being with a celebrity has its perks.

CH: Any last words?
JS: Leave you with my favorite quote: “Some men see things as they are and ask why. Others dream things that never were and ask why not.” —George Bernard Shaw

***

Whether it be a spouse, partner, parent, child, sister, brother, friend, or pet, we hope you find your missing puzzle piece.

14
Feb 2014
POSTED BY Christine
DISCUSSION 3 Comments

Erin wins her disability support case

There’s been a lot of conversation lately from several patients who have been seeking support, guidance and prayers as they apply for Disability Support. We know every state has different rules and laws governing who qualifies and we’re by no means experts but what we can do is sympathize with those patients who are struggling to be approved. The reality is, every case of NMO is different, which is why some patients are able to work, others like Christine and I (Jenna) have been able to modify our work environments or work for ourselves, and others like Erin, have a more difficult time with their symptoms and aren’t able to work at all. Erin recently won her case for Disability Support so I asked her a few questions about her experience:

1. Why did you make the decision to apply for Disability Support?
When my family sold the hotel we ran in Frisco the new owners were unable to accommodate my needs. I tried to find other work but with the number of doctor appointments Neuromyelitis Optica (NMO) patients have and days when our symptoms become a challenge I couldn’t find employment.

2. Why was it denied?
I’m not sure. I applied in May 2011 and in February 2012 I received a letter that it was denied.

3. After it was denied what were your options as a next step?
Our only option was to find a great disability lawyer, which we found in March 2012.

4. I imagine you were quite disappointed with the decision for it to be denied. What did you do to manage your stress and NMO symptoms?
I was very stressed! I just had Allen so like any Mom will tell you, that’s an adjustment on its own. My NMO symptoms had also come back with a vengeance after my pregnancy so I was spending a lot of time with my doctors to manage medications that would control my pain.

5. What was the appeal process and how long did it take?
It took me over 2 years from start to finish. I attended an appeals hearing in November where I submitted over 700 pages of documentation to the judge. Over an hour, the judge and occupational expert asked a lot of tough questions, which was very nerve racking! After the hearing the judge requested more documentation and would make a decision in 60 days. I was finally approved the end of January this year.

6. Obviously filing for Disability Support and filing an appeal are costly burdens on you and your family. How did it impact you financially?
Colorado has it written in their laws that should one win their disability support case then any outstanding amounts (ie. Legal expenses) are taken immediately from the back pay. That meant for my family the only out of pocket expenses we had was when my lawyer requested medical records I had to get from my doctors or the hospital.

7. I’m glad to hear you rightfully won your appeal. Tell our readers how that felt after it was all done.
It’s a huge relief off my shoulders. Now I don’t feel that our family will solely rely on just Eric’s income alone anymore. Unfortunately, there is also a part of me that is quite sad that I’m not able to work. I love what I used to do, which was working in the restaurant and hotel business since I was fifteen. I even went to college for culinary arts and food service management. It’s one chapter of my life I’ve now had to close although I’m very grateful my disability support was approved and I no longer have to worry about how I am going to work while managing this disease.

Our Cruise Vacation (and the chain of horrible events)

For those who know me well it’s no secret how much I suffer from wanderlust. On days when I need a quick distraction I surf the Internet for “vacation porn”, shopping for deals, reading reviews and stalking friend’s Facebook pages for travel photos. So naturally I was thrilled our family, including my mother in law and her friend, were taking a cruise on Royal Caribbean. Now, I’m very grateful that we are fortunate enough to even get a chance to go but so many horrible things happened it was beyond comical. I don’t cry when my neuromyelitis optics (NMO) acts up but a bad vacation will actually bring me to my knees.

Thurs prior to leaving – Sophie comes home with yet another sinus infection.
Friday prior to leaving – I catch her infection…again.
Saturday 9am – Mike checks us into our Air Canada flight for Sunday 9:30am flight.
Noon – news reports poor IT shuts all computers down at our airport.
5pm – we double check flight status for the morning. Website states flight is cancelled.
5:01pm – Air Canada site won’t allow rebook, reservation line is busy, travel agent didn’t even get alert it was cancelled. Advised by travel agent to “just get to the airport”. Alert those travelling with us to hurry.
5:15pm – rush out door. Arrange cousin to meet off highway for dog hand off.
6:30pm – Mike begs counter for last flight to Florida, to Ft. Lauderdale, 3 hours from port of call. No room on any flights to Florida tomorrow.
10:15pm – after several delays, flight finally leaves. Sinus infection feels like my head will explode with flight pressure.
Sunday 1:30am – Ft. Lauderdale at car rental. Their computer system is down too! Wait in short line for long time.
2:30am – leave for hotel.
3:30am – Sophie finally settled for the night. I must send work emails, research baby store since we left the stroller in our hurry.
9am – leave hotel for breakfast, buy new stroller, hit drugstore for cold meds, drive 3 hrs to port and return car rental.
Monday (day 2 of cruise) – Sophie projectile vomits at dinner. Super sick. People give mean stares.
Tuesday (day 3) – I am projectile vomiting from both ends.
Wednesday (day 4) – it is obvious we have a virus. Push through St. Maarten port.
Thursday (day 5) – quietly sick in public stall onboard overhear 2 women speaking that their husbands and son have virus with similar symptoms to Sophie and me.
Friday (day 6) – 3rd port of call, Cococay, is cancelled due to rough waters. Sophie is a nightmare as she is clearly miserable.
Sunday 7:30am – get through US customs faster than anticipated disembarking. Car service to airport I ordered not there yet. We stand in cold.
8:50am – car service finally arrives. We are frozen.
10am – we just miss earlier flight to Toronto. Our 1:15pm flight delayed by 1/2 hr.
2:40pm – flight delayed several times before finally leaving Orlando.
Late evening – Mike now sick. It is definitely obvious a virus was onboard.
Monday next morning – all 3 of us are still sick. I work from home. Find out best friend’s Grandpa passed away and other friend’s Dad had heart attack while away.

Despite all that (and more that just isn’t appropriate for a public blog) we did take some nice photos that offer a perception that we had a lovely time. I think it’s safe to say we won’t be travelling any time soon as we’re happy to sleep in our own beds.

This is us on formal night…right before Sophie became horribly ill all over our formal wear.

 We’re both horribly ill here but that didn’t stop us from enjoying the sun and surf.  

Sophie on a nature conservation tour in St. Thomas.

My Daughter – NMO patient

I’m an avid reader of the NMO diaries.  My hope, when I open the page is to hear that Jenna, Christine and Erin are thriving and helping all those diagnosed and struggling with this disease.  Encouraging words, daily life experiences and hope. But sadly, Erin has really, really struggled the last two years after the birth of her beautiful son, Allen. She hasn’t posted as much as she used too.  I used to enjoy hearing her positive, upbeat, hopeful attitude.  I’m sure this has weighed heavily on her mind among the others things she has not been able to do over time.

So Wednesday, December 4th the eve before her 32nd birthday while out to dinner, I asked her why.  It all started when I told her how pretty she looked.  After returning from patient day, she gave me a copy of Christine’s cookbook which was autographed along with many “goodies” she brought back.  I was amazed and my heart filled with joy that she could & would  lug all those gifts back from LA for me. Her mom. Then I asked her why she hadn’t been blogging.  I’ve always felt by helping others helps you feel better. Well, that’s all it took. Her beautiful brown eyes filled with tears and the flood gates opened.  She explained how she missed blogging, how she has just struggled with her health, her weight, juggling her marriage, motherhood, doctor’s appointment,  plasma exchanges, iron infusions, and of course chemo treatments.  Most of all the constant pain her body was in. I felt as if someone had taken a sharp stick, pierced my heart and was roasting it over a fire pit. Wait, wasn’t that how her feet felt today? And with it being -5 below that night she had to wear shoes and socks. As a parent, you can understand how I tried to put a band aid on it.  By saying things like” Don’t let this disease define you! You define this disease” “You have to get through this somehow someway” “We are all here to help you but you have to keep your mind positive”. Really, who am I kidding here? I don’t live in her skin. I don’t know for one minute how she copes, I don’t know for hour what it’s like to have this horrid disease at such a young age with her future uncertain. But as her mom, I have to try to keep her spirit going. For I believe that the human spirit can achieve and overcome anything. I believe that to the very core of my sole. I also say those things for me. That’s MY baby girl. I must be strong for her, when she can’t.  If I let her spirit give up then there is no hope. I just can’t let that happen. I won’t.

She has asked me if I have read Ali and Victoria’s book.  The answer is, I have tried several times.  Part of me wants to, just to get hope and answers. The other part of me says why do I need to read this? I’m living it.

But then she said, I just want someone to understand the patient side. So my commitment to her is that I will. I am.  As a mother of an NMO patient, I don’t have all the answers, the future is unkown. But this I know. I love her with my heart and soul.  I wish I could give her my body and take her burden on.  I love my darling Grandson, that she gave her all to have.  I remember when she told me that she was pregnant. Such joy, such hope.  Then flashes of “Steel Magnolias”. Oh God, what will happen to her. So I push those thoughts away, take a deep breath.

What I do know is she has great resources with the GJCF, amazing friends in Christine and Jenna. The love and support of her family and friends here.  Most of all, I hope your support -  fellow NMO blog readers, to send notes of encouragement to help battle this disease.  It is only through support of everyone, that our loved ones will not only survive but thrive.

I know we are all hoping for miracles, but today I’m hoping my daughter can just live one day, normal, pain free. Just today.

Terri- aka Erin’s mom

10
Dec 2013
POSTED BY Erin
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Christine’s take on NMO Patient Day 2013

Wow. Looking back, I have not had a chance to write a blog post in over a year. But because after NMO Patient Day a couple of weeks ago, and Erin, Jenna, and I finally had a reunion without the men, we talked about our defunct blog and how we should try to resurrect it, as many had originally sought information and empathy here.

NMO Patient Day is a conference of sorts, sponsored by the Guthy Jackson Charitable Foundation, and held for one day once a year. It’s a chance for NMO patients from all over the world to gather in one place (always L.A. As that’s where GJCF is located) and meet each other and have access to physicians and clinicians and others working towards not only a higher quality of life for those living with Neuromyelitis Optica/NMO, but a cure.

Erin, Jenna, and I’d met at 2010’s Patient Day, and because we live in Denver, Toronto, and Houston respectively, and because we all live very busy lives, it’s hard for us to catch up, let alone update this blog regularly. But after speaking at this year’s Patient Day about my journey on “MasterChef” and what it means for the bigger picture to me and my fellow NMO-ers, I thought I would drop by here and say hello…

…so, hello!

It’s funny because a year ago, I was terrified of public speaking. A large percentage of the public polled say they fear public speaking more than death. Well, I don’t know about that. But I do know that I’m the kind of person that likes to challenge myself. And that means, whatever it is that causes me discomfort or fear, I tend to put myself in the situation, face it head-on, and try my best to conquer it. That goes for skydiving, snowboarding, going on national (and now international television) to compete. And now, it means speaking before large crowds.

Because I am blind, and because I still cannot read Braille as quickly as I used to read print, I don’t take any notes up to the stage with me when I speak. Instead, I have to memorize bullet points in my head and hope that I hit upon all my key points and in a cohesive order. I never like to rehearse my talks because I feel it takes away from the casualness of it all—and I prefer to keep it casual, not just because that’s my style, but because formality scares me even more. (There’s something about formality that breeds an expectation of perfection.)

But here we were, a couple of weeks ago at Patient Day, and it was probably my twentieth speaking engagement since last year. I still get nervous: my body temperature still drops, my mouth still gets dry—but at least I don’t want to puke anymore. It’s all about the little progresses, right?

Thank you to all who made NMO Patient Day happen, either by coordinating or attending it. I’m glad I met more of you, and I’ll try to put a voice to the name for next time.

And if you didn’t get a chance to attend this year’s Patient Day, stay tuned to the GJCF website—the video should be posted soon.