Washington D.C and Dr.Levy

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

 

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

 

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

 

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

 

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

 

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

 

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

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

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

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

 

 

 

 

 

Thanksgiving Weekend

Totem detail (MOA)

Totem detail (MOA)

Happy autumn everyone! Here in Canada, we’re on the last day of our Thanksgiving weekend. Mine started out Friday morning with an early morning field trip to the University of British Columbia’s Museum of Anthropology (MOA). Visiting this particular museum has been on my life list for ages and I finally had the opportunity to see it thanks to an amazing local group I belong to called Creative Mornings Vancouver. This month, they arranged for members to attend one of two tours before the museum opened for the day. One was about the tools the MOA uses to preserve and treat the pieces in their collection and the other was learning about the stories behind some of the pieces that were created to provoke social change. The day began with a lovely breakfast of pastries and tea and coffee and after the guided tours, we were able to enjoy the rest of the museum at our leisure.

Totem in the great hall. (MOA)

Totem in the great hall. (MOA)

MOA is home to an impressive collection of Canada’s First Nations’ art, but also exhibits indigenous art from other parts of the world. The size and diversity of what’s on display is almost too much to take in in a single visit. My favourite part of the museum is the great hall. The totems and other large scale pieces housed there are incredible. The outer wall of the hall is floor to ceiling glass, giving the illusion of being outdoors. The natural light in the hall really shows off the beauty of the wood and the colours used in the totems. It’s been 3 days since I was there and I am STILL absorbing everything I saw. As an artist, it was incredibly inspiring.

Haida Bear by Bill Reid (MOA)

Haida Bear by Bill Reid (MOA)

Sunday, we had friends and family over for turkey dinner. I always do our Thanksgiving on the Sunday so Monday we can coast on leftovers and relax before everyone has to go back to work. I was a bit apprehensive about hosting the dinner this year because I have really been struggling with my heath and especially with pain from RA. I don’t know what I was worried about though-every time I asked someone for help with something, they were great about jumping in. My son set the table, my best friend carved the bird, my husband and son took care of all the dishes afterwards (we don’t have a dishwasher) and somehow managed to get all the leftovers to fit in our fridge. (It’s like Tetris in there, but hey, whatever works!)

Today, I am relaxing and feeling grateful for such a great weekend. It’s good to be reminded that there is beauty in the world and to be surrounded by the people I adore.

Happy Thanksgiving to my fellow Canadians! I hope your weekend was full of good memories, great food and time with those you love.

10
Oct 2016
POSTED BY Lelainia Lloyd
POSTED IN

Everyday life, Family, Food

DISCUSSION No Comments
TAGS

Making the Switch

blogger-image-242591410

 

Last month, I started on Rituxan. My first infusion was going to be run over four hours, but ended up taking four and a half hours. I was fine for the first hour and a half and then my throat started to feel really raw, I began to cough and eventually I was sneezing so I asked the nurse if this was a reaction to the infusion. Turns out it was. At first, she tried to talk me into toughing it out. I am really drug sensitive so didn’t think this was a good idea, especially when she said she would be turning the flow rate of the IV up. I insisted she give me some Benedryl and steroids to stop the reaction. She turned the IV off for about half an hour to give the medications time to work and once I felt better, turned it back on. I was fine for the remainder of the infusion. The first day after the infusion, I felt okay. By the second day, fatigue hit and I spent the next two days napping off and on. It took me a bit to figure out that this was how my body was dealing with the infusion.

For the second infusion, two weeks later, I was told to take 50 mg of prednisone (steroids) early in the morning, instead of late the night before, with the hope that I would sail through the infusion more smoothly. I woke up at 5 a.m. to take the steroids. Not the best taste first thing in the morning (or any time for that matter) but it seemed to do the trick. This time, I was able to do my infusion in just three hours. My next round will be in late February next year and those infusions should be done in two hours.

It’s been interesting switching to a biologic. I am taking it to treat another autoimmune disease I was diagnosed with recently-the fact that it also works for NMO is just a bonus. For the first time in nine years, I am not constantly taking a handful of pills or giving myself a daily injection. I am also no longer taking prednisone, aside from the 50 mg pulse I do right before the infusions. It’s really hard to wrap my head around this. Weirdly, I feel like I should be doing more. I am really hoping that this biologic works for both diseases and I can finally feel better. As I mentioned in my previous post, it’s been a really rough summer-I have been the sickest I’ve ever been and it’s been pretty scary.

So far, I have the fatigue for a few days after the infusions. I’ve lost my appetite-I am only picking at meals. I am still in a considerable amount of pain which right now is my biggest concern. I was told it can take a month or more to see the benefits of the Rituxan. I am hoping it kicks in soon. Meanwhile, I am working on recovering as best I can and trying to get on with my life. We are transitioning to autumn weather here on the west coast of Canada, so the cooler temps are lifting my spirits. (Autumn is my most favourite time of year.)

I hope things are good in your neck of the woods!

12
Sep 2016
POSTED BY Lelainia Lloyd
DISCUSSION 7 Comments
TAGS

In Survival Mode

Things have been quiet at my end for the last 3 months because I’ve been pretty sick. My time has been taken up with medical appointments, tests, referrals and just trying to survive. I’ve spent a lot of time in bed, feeling awful. That’s not my normal-I am usually quite busy and like it that way.

To try and keep myself entertained I’ve been falling back on photography, which I enjoy. I have a DSLR camera, but it’s too heavy to lug around, especially when I’m not feeling well and seeing as my “outings” are simply to walk my dog, my iPhone has been my go-to. Nothing wrong with an iPhone camera-it does just fine, as you can see.

 

indysummer2016

Being home more has meant my best friend Indiana Jones has been keeping me company. He’s a good pal to nap with. I did manage to get up to the lake early one morning before it got too hot and manage to capture this half out of frame shot of him with his water Kong, which I actually really like.

1

It’s also meant slowing down and noticing the small details around me like the lichen and moss on the bark of a tree in the park near our home and the secret apple tree I found by accident. I am now watching these apples and plan to pick some when they are big enough!

blogger-image-1647831190

The Olympics are now on, followed by the Paralympics. Anyone who knows me, knows I am a huge fan of the Games. I’ve been watching on my iPad and cheering for Team Canada. Team Canada is made up of 60% women athletes! Our ladies have been having huge success and we’re only on day 3! I am watching women’s footie (soccer) and women’s 7’s rugby obsessively. GO CANADA!!

So that’s pretty much been my summer in a nutshell. I am keeping this short because my vision is blurry and my hands are not typing as well as they usually do. I am waiting for treatment, which I am hoping to have booked some time in the next week or so. I am more than ready to get my life back.

 

08
Aug 2016
POSTED BY Lelainia Lloyd
DISCUSSION 2 Comments
TAGS

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…)

ALLEN 1st year playing Tball

YouTube Preview ImageThis year marked my 1st year being a sports mom. Allen started Tball in April and finished playing the end of June. We signed him up to play Tball for a few reasons one main reason was so he could play with other kids and second was his best friend from school was also playing Tball. I was nervous about not knowing if he really would enjoy playing and of coarse his attention span. For this being his first year he did a pretty good job. Allen really enjoyed hitting the ball but that’s about it. When he was suppose to play in outfield he would just sit there and play in the dirt. It took him a little while to learn the base patterns but for 4 years old he did a pretty good job! He was Happy T ball was over the end of June since it started to get hot and some of the games he played was almost 100 degrees. The most important thing out of this is that Allen had fun and he met new friends. Hope you all enjoy the photos and the video of him playing. The lesson I learned out of being a sports parent that I wanted to be one of the parents that helps with the team and get to know the kids that are playing on the same team as my son. The other lesson was learning to juggle everything on Saturday for games that were right in the middle of the day.

 

IMG_4024 IMG_4048 IMG_3649 IMG_3585 IMG_1786 IMG_1882 IMG_4567

18
Jul 2016
POSTED BY Erin
DISCUSSION No Comments

So Many Pills

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

(more…)

8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

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

IMG_0831 IMG_0836 IMG_0843 IMG_0841 IMG_0840 IMG_0839 IMG_0838 IMG_0844 IMG_0848 IMG_0846 IMG_0850 IMG_1199

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.