How to support others in crisis

Loved one: Its been tough feeling this horrible, dealing with doctors, missing work, but it’s nothing compared to what you’ve been through or go through everyday.

Me: They aren’t the same thing. My normal is different than yours is. It doesn’t and shouldn’t minimize what you’re going through. I’m still here for you, even if just to listen.

Loved one: No, I know…I just don’t know how you deal with feeling like this all the time. 

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There’s a funny thing that happens when you’re diagnosed with an incurable, possibly life threatening, beast of a disease – no matter what ailments affect other people they will inevitably compare their struggles to ours, and more often than not, feel like they don’t have a right to complain to us. I know the above conversation or some version of it always comes from a good place. I know my loved ones would never minimize how difficult my everyday is. 

But we’re not talking about me. We’re talking about you.

I get it, being dealt a bad hand with you or your loved ones health is head spinning. Suddenly there are doctors with different opinions, a foreign language with long terminology, appointments, check ups and tests. There is pain, the emotional sometimes feeling more raw than the physical challenges. It will change your current lifestyle and for some even require permanent changes. Nothing makes you feel more vulnerable than failing health. 

Having dealt with medical practitioners for years has certainly given myself and even my husband a level of expertise we wish we didn’t possess. We’re not regularly vocal about my health but we also don’t hide that I have neuromyelitis optica (NMO). Friends, family, even co-workers and clients will seek us out for advice when they encounter the medical ‘system’. They know we’ve put in our time and are continuous learners and they need to ramp up their knowledge now.

I try to avoid using language like, “well I did this” and never use language like, “it’s not as tough as this”. I will always ask how their body feels but also what they are thinking about, no matter how irrational it might sound. I am grateful to hear them out because many did and still do for me. I let them know I am always hear to listen because their loved ones will also need time to process a new reality.

I am relatable for all the wrong reasons. Perhaps their health challenge is only temporary like a surgery with a recovery period or it is unfortunately a forever deal. Regardless, their today isn’t great and I want to support them like others have for me. 

Photo credit: Evan Kirby

Enduring NMO back pain

We all know back pain but for neuromyelitis optica (NMO) patients most of us know it that much more. Ever since my transverse myelitis (TM) attack in 2009 I’ve known serious back pain to be part of my every day existence.

I recently threw out my back with an awkward twist. There was a small pop noise and a shot of pain and then it subsided to something manageable, or at least I thought. Over 2 weeks I took it easy and figured with a little rest it would recover back to my normal. But it didn’t happen and after a few more weeks where it really affected my every day tasks like cooking in the kitchen, sitting at my desk or even walking, I had to ask for help.

I’m currently undergoing physiotherapy treatments for a serious case of sciatica nerve pain and a rotated hip but what else I learned about my body shocked me.

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In this first x-ray image we found not one but two fused sections of vertebraes in my neck, a genetic defect that unfortunately nothing can be done. But it certainly helps explain my forward head and poor posture, which trickles down to lower back pain to compensate the weight of the head.

In the second image it’s very clear I suffer from scoliosis. There are two types: acquired (from poor habits that can be improved) and genetic (that nothing can be done and that’s evident if the scoliosis is found in the lower spine as well). As it turns out I’m just lazy so I’m needing to re-train myself on how to sit properly and I’ll be taught how to undue my acquired scoliosis. 

In the third image we see my hip rotated (it’s smaller than the other, which is how we can see it isn’t sitting correctly), but we also discovered poor spacing between my vertebraes. The gaps between vertebraes should increase the further we go down the back but mine does the opposite. The disc that cushion impacts have also diminished. No one knows why my spine looks like this but at 35 years of age it could be anything from major impact falls, pre-arthritis, poor bone density or in my case repetitive high dose steroids that have deteriorated the quality of my spine. Oh, and it could have something to do with those awkward lesions left over from the TM attack.

As part of the treatment I’m seeing a chiropractor, physiotherapist, athlete specialists, massage therapy, and eventually kinesiology all working with the same clinic, Rosedale Wellness. I’ve been blessed with this incredible team of professionals who are taking a holistic approach to my recover but more importantly my long term sustainable spine health. It hasn’t been easy though. The treatments leave me dazed because my body isn’t familiar with the new posture setting. The sciatica hip pain is relieved temporarily but as I return to life it slowly returns. And the time commitment to good health is something I’ve had to decide I will stick with until the team feels I have enough tools and recovery; As a mom and entrepreneur I’ve had to off shift my responsibilities and that’s resulted in late nights as my new norm. 

For NMO patients who think back pain is something that just comes with the package I recommend speaking to qualified specialists because it might not be the case for you, just like it is starting to be for me.

Washington D.C and Dr.Levy

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

 

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

 

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

 

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

 

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

 

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

 

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

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

http://hanksoysterbar.com

http://www.henquarter.com

https://sprinkles.com

 

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City Exploring: Los Angeles and San Francisco

I find peace in my life by being present in every moment and working towards a better mindful meditation practice. That’s how I thoroughly enjoyed my summer vacation.

This year my family and I travelled to Los Angeles with a stop over in San Francisco before returning home to Toronto. Not one to want to waste a moment (and to constantly entertain a 4 year old) I jam packed our schedule in an attempt to see as much as possible.

We started with 2 nights in Anaheim at Disneyland. A smaller property than Disney World in Florida, there a lot of the same rides. My body fatigue has really affected me lately but with good planning (so you’re not running from one side of the park to the other), and a nap midday, it’s possible to see the best parts including the night time parade and fireworks.

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We headed into Los Angeles and visited their farmers market, The Grove, and the pedestrian shopping district. I thought it might also be fun to rent a powerboat and cruise the coastline. After an hour of choppy water (yup, we were sea sick) we opted to stay inland and enjoy some marina cruising. We visited the beaches including Venice Beach with their famous Muscle Beach attraction. I admittedly felt unsafe there because as a tourist trap every street performer, vendor and homeless person wanted our money, and asked in an aggressive manner. And we took in the natural phenomenon of the La Brea Tar Pits, which is as it sounds; natural tar that has risen to the surface and trapped fossils dating back hundreds of years.

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We finished our trip in LA at the Santa Monica Pier. On a bright, sunny day we peacefully strolled through the park, just enjoying each other’s company and being grateful for moments like those. I will say that the pier is not a smooth walk. With our small travel stroller, Sophie complained the ride was bumpy and the wheels occasionally got stuck in a ridge or groove. I might not recommend the entire pier to those in a wheelchair. You can still enjoy the view from the adjacent park.

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I booked San Francisco thinking I’d love to explore the city but hadn’t done my homework to know it’s quite an expensive city. Accommodations, even modest ones, can run several hundred per night. Don’t think about renting a car and parking; Even with Uber from one destination to another it is much cheaper. San Francisco has their famous Fisherman’s Wharf. A real fan of seafood and meats (protein is your friend when on a Paleo diet) I ate the largest crab in my life, cooked before me on the pier. We also spent a day visiting the Alcatraz Prison Island. I hate audio tours but this was fantastic. Wheelchair accessible with elevators on the island and the ferries, it is a sight for all to enjoy. There is a bit of walking but take breaks because you can leave on any ferry when you’re ready. Be warned about the city in general though – it’s much colder then you’d imagine and the streets are so steep cars ride their brakes often.

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I’ve always thought of myself as a beach bum or an adventure seeker but never as a city explorer until this trip. If you decide the west coast is somewhere you might want to visit, both cities and their people have so much to offer.

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Medicinal Marijuana for NMO

Throughout my NMO journey I’ve tried to keep an open mind towards alternative medicines. I’ve had great success with naturopathic care, acupuncture and osteopathy so when many of my trusted friends suggested cannabis, or medicinal marijuana, I thought it worthwhile to look into it. Cannabis has a bad reputation; Many people think marijuana is for a bunch of hippies getting high and eating Cheetos. Others think getting a marijuana prescription is just for those making up mild conditions who want to get high. Whilst both might be true in our world there are some fantastic testimonials from real patients.

I’m not the type to role a joint and get high but throughout my research I discovered CBD oil, or Cannabidiol, which can be consumed with a few drops on food, in drinks or straight under the tongue.  You can even diffuse CBD oil but others in the room will also feel the effects. There are many strains that have low or no THC levels, which is the component that gives the feeling of being high. I was transparent with my family doctor that medicinal marijuana was something I was considering. He was honest that he didn’t have extensive experience nor could he prescribe it but he did refer me to a reputable clinic that did.

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I’m fortunate that a close friend happens to be a key sales rep for one of the major distributors of medicinal marijuana products in North America. He spent a lot of time understanding my symptoms and suggesting the best CBD oil products. Here are my take-aways of CBD oil:

  • It still stinks. If you dislike the skunky smell of marijuana you still won’t like the oil.
  • Marijuana strains are very different and have names like Indica, Sativa or Hybrid. ie. Some help with insomnia, pain management, fatigue and/or several different combinations.
  • Each production changes so although manufacturers try to keep the potency levels as close to the last run it’s never exact. Remember, marijuana is a plant.
  • Because of production changes, prescriptions suggest amounts but the patient will need to dose up or down for each new bottle.

I tried CBD oil for several days and I’ve made the decision it isn’t for me. I dosed up and then more (and then more) and could never get the same relieve prescription medication provides me. I struggled with the taste (it was not that noticeable but did have an aftertaste) and after a certain amount I did feel somewhat paranoid. The one positive about CBD oil was that it helped with my insomnia but my other needs were not met. I felt frustrated trying to convert the prescribed grams into millilitres and then into how many drops that translated into.

I think there’s a place for medicinal marijuana but we’re still in the infancy stage. Doctors don’t have enough historical data to understand how the drug might best help different diseases. I can certainly see how marijuana might one day be part of the treatment plan for NMO patients and I know many who already do. The marijuana drug industry is regulated (and legal in many countries and states) but it’s tough for governments to monitor it. Uneducated patients may purchase from small retailers instead of one of the larger manufacturers direct and might purchase marijuana that is unsafe (ie. With pesticides or cross contamination). If you do decide that medicinal marijuana is something you want to try spend the time researching and choose a reputable clinic, doctors and distributors.

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.

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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…)

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.

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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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What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.

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.