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

 

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Good mental health is critical to managing your physical health

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

stress

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

Guest Blogger Lisa McDaniel talks about: Why she is a strong advocate for NMO Patients

Why?

Why do you do it? How can you work with NMO patients after you lost your son to this horrible disease? Those are questions I hear quite often as I work within the Guthy Jackson Charitable Foundation as well as from those in my personal life. There is a simple yet complicated answer. The simple answer is I do it because I care and because it is important to me. The complicated answer goes much deeper.

For those who don’t know our story, I will give you the short version. Our son, Collin, was barely 5 in 2007 when he first lost his vision. It took a few months before he was diagnosed with NMO. His course was very severe with constant flare ups of optic neuritis as well as transverse myelitis. After 4.5 years of suffering and fighting with everything he had within him, Collin passed away on March 29, 2012, at 9.5 years old (we must remember the .5 according to what he always told us). Yes, it is a very sad story if you stop there. Of course, we were and are still heartbroken and we still miss him tremendously. However, those who have followed this story and lived it with us know our story did not stop after his death.

A google search in early 2008, led me to very negative information about NMO. It also led me to an email group where I met some amazing people online. Those people became my family’s lifeline and helped me to learn everything I needed to know about NMO. I learned about the correct medications for NMO, the differences between medications for a flare-up versus medications for prevention of future flare-ups, what to look for to recognize a flare and other things NMO patients and families need to learn. The information I learned was great, however, well beyond the information I gleaned was the sense of support and family I received.

In 2009, I was able to attend the first ever NMO Patent Day in Los Angeles, CA. It was overwhelming as well as amazing. It was the first time our NMO community had been able to come together outside of the email support group. I met and interacted with doctors who took an interest in Collin and did their best to help us figure out the right combination of medications for him. I remember leaving LA filled with hope for the first time since Collin had been diagnosed. I vowed then to attend every Patient Day I could.

Throughout the years of Collin’s battle, I became close to many of the patients and families, as well as doctors in the NMO community. When Collin passed away, it was devastating to our family, however, it was also devastating to the extended “family” we had met through NMO. It was at then I knew I had to stay in contact with those incredible people, but I also knew it was time to change the role I was in with them. It was time I gave back to them a little of what they had given me and my family. Not long after Collin’s death, I had the opportunity to go to work with the Guthy Jackson Charitable Foundation as the Consulting Advocate.

I am honored to be able to serve the NMO community. I love working with the patients and families as they seek information and support. One of the best things about working with the families is empowering them with knowledge and helping them learn to advocate. Advocacy is very important when a rare disease is involved, whether it is advocating for a loved one or for one’s self. As we build knowledge, we can build awareness in the world and with awareness, a diagnosis may be quicker. Education is important so patients know when to call their doctors and fight for what is needed. We don’t need to have huge plans and goals to advocate, we only need to make our minds up to take any size action. To quote Edward Everett Hale, “I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

It is incredible to make a difference in the lives of others. It amazes me how I am called upon to help educate doctors and medical staff about NMO, which in turn helps future patients. I am just a simple mom who wants to make a difference and wants to continue fighting a battle one little boy started. I, like Victoria Jackson, am just a mom on a mission! I have a heart for my NMO family and I have a passion for helping them. That doesn’t make me special, it just makes me willing. I am humbled to continue the work Collin led me to. I am not writing this to toot my own horn, but rather to share a beautiful story with you. Realize, this story is not about me, but about what can happen when a life is changed. If you want to know anything about Collin at all, know he was an incredibly compassionate child and I have no doubt at all he would want me to be helping those who are going through the disease which took his life. I am not stronger or better than anyone reading this and everyone is capable of doing what I do.

Another way Collin encouraged me to make a difference was through The Collin McDaniel Hope Foundation. My family and I started CMHF along with our Co-founder, Johnnie Sue Gilbert, whose son Nathan is living with NMO. It is our mission to make life just a touch easier for families who have children diagnosed with NMO. CMHF helps with medications, travel, wheelchair ramps and other things children diagnosed with NMO may need. While it is a small non-profit, we have been able to help many families in the last 3 years.

While my work is incredibly painful at times, it is also incredibly rewarding. Why do I choose to do it? All because God chose me to be the mom of one little red headed boy who changed my life and touched immeasurable others in his short life. To me, this is Collin’s legacy and that is the real answer to the question, “Why?”.

Patient Day 2016

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

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

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

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

http://guthyjacksonfoundation.org

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Guest Blogger Heather Sowalla NMO and Teens

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

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

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

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

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

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

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

Things Only NMO Patients Will Get

I missed this year’s NMO patient day but absolutely loved seeing all the posts and photos of past and new attendees connecting with each other. It’s what has inspired this week’s post that only NMO patients might appreciate.

1. (Upon seeing you in person) “I’m so glad you’re feeling better”
NMO patients always sympathize with the inevitable prednisone use, which causes weight gain including the dreaded “moon face”. Those who aren’t familiar might assume the weight loss or return to normal weight means you’re healed from the disease, but that’s just not the case. Prednisone is used to treat flare ups or as a precautionary measure.

2. “But you were walking yesterday. What’s wrong with you today?”
NMO symptoms can flare up and cause different mobility from day to day or even from hour to hour. This is tough for others to understand who don’t realize how symptoms work.

3. Having to cancel on your friends and family…again
This is related to #2 and the unpredictable nature of NMO. If you’re like me, you’ve probably had to make excuses that seem easier to understand like “my kid is sick” or “I’m stuck working late”. It can be heartbreaking for patients when the invitations stop coming because they assume you’ll probably have to cancel anyways.

4. The stubbed toe syndrome
Right now 3 of my 10 toes are badly bruised. That’s because my mobility gets thrown off, I walk into things because of the numbness and vertigo is sometimes a problem.

5. Healthcare is expensive
Even if you have extended health coverage, having a medical condition is very expensive. The medication alone can cost a fortune and that’s before any additional maintenance care like massage therapy, acupuncture or doctor appointments. And most patients can only work limited hours or survive on disability earnings.

6. We know how to navigate the medical system
This is a broad statement that might include best time to call for an MRI, the nicest nurse for blood work or even best time to pick up a prescription from the pharmacy. Most of us are even on a first name basis with our neurologist!

7. Food is our friend (and our enemy)
Eat what makes you feel good but that usually means really restrictive diets. Eating with others fuels our sense of belonging but people can get weird about our food limitations.

Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Help Take NMO to the Next Level: Complete This Clinical Trial Survey

I always reminisce about how the Guthy Jackson Charitable Foundation’s 2010 NMO Patient Day was the catalyst for the birth of NMO Diaries. That’s why I have a soft spot for GJCF and its mission to better the lives of those affected with Neuromyelitis Optica/NMO through advancement of therapies and search for a cure.

The latest project at GJCF is a clinical trial survey that will bring together people living with and blood-related to those with NMO into a pool of possible clinical trial candidates. Filling out the survey doesn’t automatically enroll you in a clinical trial; rather, it helps measure your knowledge of and willingness to participate in clinical trials.

I, myself, have enrolled in a few clinical trials before, and yes, it takes time and resources, but I participated because I have hope for the future generation that NMO can one day be a thing of the past, like polio! Whenever I have the time and qualifications, I make an effort to contribute whatever I can to better the lives of everyone affected by NMO, including myself.

Even if you aren’t sure, I encourage you to complete the GJCF clinical trial survey and be part of a movement to improve our lives.

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.

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.