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.

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.

Snowboarding in Whistler

We’ve just returned from what has now become our annual ski trip to Whistler, British Columbia and it was, wait for it…awesome! After years of on again off again learning I finally feel confident enough to call myself a snowboarder. Making such a bold statement is a big deal because for once I’m actually proud of myself.

I’m a snowboarder with NMO.

Neuromyelitis optica has robbed me of so much but it hasn’t taken away my spirit for adventure. Finally comfortable enough to complete blue runs in Whistler, I rarely fell on the mountains. Swooshing down at a max speed of 42 km/hr (there’s an app for that) I completed several hours each day, for 5 straight days in a row.

In your face NMO!

I will confess though; this was the most I’ve pushed myself physically since my major attacks. And yes, it hurt, a lot. On every run my back screamed in pain and my legs tingled till they went numb. I knew it was time to take a break when my body wouldn’t complete anymore turns. It usually resulted in a fall from exhaustion/pain. So why do it? Because the sense of accomplishment and adrenaline is my new drug. It easily outweighs any amount of pain or fear of heights. The ongoing pep talk in my head is an exercise in will power. It is how I have always planned to live with NMO.

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Me boarding one of the back bowls on what was quite a foggy day. The run is called “Burnt Stew Trail”.

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Me, stuck in powder snow. I am laughing hysterically because it was like falling into a cloud.

 

Now, I’ll never be an Olympic snowboarder, but my kid might be.

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Sophie, 3 years old. Having completed a week of ski school.

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Family photo, Whistler, British Columbia, 2016.

Elf on the shelf

When Allen was a baby people were telling me about this Elf doll that comes the 1st of December and watches their children every day till Christmas Eve to see if they are being naughty or nice. Then at night he flies back to the North Pole and gives Santa the report on their child. I just could not believe what I was hearing about all the rules and to what great lengths these moms have gone to make the elf do certain things. I kept thinking in the back of my head. This seems like a lot of work? But every mom told me it so much fun and to see the look on their child’s face when they woke up in the morning looking for the elf to see what the elf go into that night.

Forward to this last Christmas I broke down and bought an Elf on shelf. A Couple of weeks before December 1st I started looking on Pinterst, The web, and Blog sites for ideas of what to make this elf do cute things every morning for Allen to see and get interested finding him every morning. Finding a way for him to arrive was the easiest part. Buddy that’s his name that Allen gave him arrived in a box with a letter from Santa telling Allen why he was here to visit him and all the rules about not touching him. For the first few weeks Buddy was with us I had it covered what to do with him every day. The one thing I had to do is wait till Allen went to sleep that night and then go set up Buddy. I did not want to do it in the morning since I never know really what time Allen would wake up. Like I said for the first few weeks I was great with ideas for Buddy but after that I would sometimes struggle with ideas for him. As I would look for ideas on the web I couldn’t help but think do some Moms have a special container for all the props for their elf? I could not believe some of the stuff they had their elf doing and how much time it would take to set it up. I am sure when Allen gets older I will have to be more creative but this year I think I did a pretty good job for my first year. Allen was very happy with his elf, he was very sad when he left with Santa for the year. I told Allen he should be back next year if he continues to be a good boy. Now the next question is do I get Alana her own elf the girl version? Then I tell myself that’s just more work and more ideas I will have to come up with. We will see I have a few more years to decide.

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03
Feb 2016
POSTED BY Erin
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Blue Monday

Here’s something I didn’t know until this week: the third Monday of January has been named “Blue Monday” aka the most depressing day of the year. Created by a marketing genius in the travel industry, Blue Monday is when New Year resolutions typically end, credit card bills roll in, and you can count that it’s usually cold outside.

Now I don’t buy into any of the hype. Maybe it’s because I’m a realist or maybe it’s tough to break what is already broken (thanks neuromyelitis optica). Regardless, my take it or leave it/it is what it is attitude wasn’t phased by it. Or so I thought.

One of the most challenging things NMO patients face is navigating personal relationships. Most of us are really blessed to have great support networks but on occasion even the best ones can fall apart. Other than the ask for medical advice, the most common thread on the patient support site is on how to manage relationships when we don’t feel good. For those of us living with disease, stress can really affect us and nothing is more stressful than the disintegration of our relationships. Furthermore, it’s tough to have those closest to us be sympathetic to our physical needs when they are angry with us.

Maybe the universe likes to ‘keep it real’ for me as it seemed like everyone around me on Blue Monday was just not in sync. Despite being busy, I will always make time for my friends and family, especially when they just need an ear to listen. And that was tough because I care and I internalize that and by the end of Blue Monday I was exhausted.

So here’s my advice for patients dealing with drama, either your own or that of others:

  • Get a best friend. I am nothing without mine. She hears out my rants (always siding with me) and is the third party of disbelief (I have to tell you what so and so did! Can you believe she did that?!)
  • Put a time limit to how long you’ll deal with a situation. If you must fight take a time out after a set time. If you’re the sympathetic ear, end the call/visit after a certain time frame.
  • Remember, it’s their drama and they just need an ear. If it’s your drama, know what you need to end it and tell the other party. No one reads minds.
  • Get sleep. Eat. Take your medication. Don’t punish yourself beyond the conflict.
  • Get some physical activity. Take a walk, exercise, get fresh air.
  • Laugh.
  • Remember we’re probably tougher than the other person because we have to kick NMO’s butt every second of every day. That gives us an advantage and thus, not even a fair fight.

Vermont in December

As we approach Christmas Day I am bombarded with the usual holiday insanity of planning, parties, gift wrapping, and festivities. So right before the busy holiday season I booked a road trip for us to the beautiful state of Vermont. There’s nothing more I live for than the quality time I spend with my family together and I wanted to make sure the 3 of us got that in before our attention wandered. We stayed at Smuggler’s Notch Resort, a ski property hailed as the #1 family resort on the east coast and unfortunately (or fortunately depending if you’re not a fan of the cold weather) there wasn’t any snow except for on the top runs of one of the mountains and on the beginner hill.

After 7 years of trying to learn how to snowboard, last year things just clicked so I was really looking forward to seeing how well I’d do this season. This was also the year I decided I’d let Sophie try skiing.

Sophie is 3.5 years old now. I started her in dance when she had just turned 2. At the time I knew she loved music and after a year of weekly classes, Sophie surprised everyone with her confidence on stage. But watching your child go barrelling down a ski hill, even the bunny hill, is something I wasn’t sure I would ever be ready for. Maybe it’s because I’m actually not the greatest on the mountain, my fear of heights or that no parent wants to see their child get hurt but I secretly hoped she’d refuse to strap on the gear and quit. Then we’d try again next year.

But apparently I’m raising one tough kid.

After a few runs with her coach Sophie figured out the magic carpet, balance and how to go down the beginner hill. In fact, she announced that she wanted to do it herself and from that moment no one could help her. By noon on her first day she was focused, confident and having a ton of fun. And she taught me an important lesson.

Sometimes I think I’m up against a challenge or an uncomfortable situation, like having to stand by helplessly and watch my child figure out a dangerous sport. But in reality, it wasn’t tough at all. In fact, had I not left Sophie to her very capable coach I might have projected my fears onto her. That day Sophie taught me that things aren’t always as they seem. Tough situations might actually be challenges where we learn something about ourselves, and our kids.

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Surviving the Holidays with NMO

As we all can agree with from Thanksgiving all the way to New Years is just chaos for a lot of people. I just survived my first year hosting for twenty people at my house. While trying to manage my NMO, having a terrible cold and two sick kids. For people who have never cooked a Thanksgiving dinner may not realize what a production it takes. It takes me a couple of weeks to organize and make a menu. Then a few days to go shopping and pick up everything then a few days of cooking. Then a few days after Thanksgiving to clean it all up and put everything back. While trying to get all this done I try to rest whenever I can even if that means sitting on a tall bar stool to cook. Try to nap when the kids are napping and breaking up my shopping trips into a few days rather go all day running around to all the stores. This year I had two very helpful helpers my mother and Mother in law. They helped me cook, clean or watch the kids. That was so very helpful.

Next during the busy holiday season is my birthday, which is not so stressful on me I get to enjoy being with my family and spending time with them. Eric treated me to a hotel in downtown Denver to watch the parade of lights. It was so nice and enjoyable for all of us especially the kids I didn’t have to worry about if they were getting cold. Now that Christmas is going to be here before I know it. I am buying a lot of my gifts online this year so I don’t have to load and unload kids and bags from the car. Plus how can you argue with buying most of your gifts online while sitting on the sofa with your pajamas on. I just can’t deal with crowds like I use to before NMO and shopping all day. I simply can’t do it. It wears me down so fast then I am in too much pain to deal with Christmas stuff. I want to enjoy Christmas especially with Allen getting older he has been so much fun this year with Christmas. This will be Alana’s first Christmas and that’s always a fun one too. We also decided not to run around to a bunch of houses this year during Christmas. We all can agree its hard living life with NMO then you add all the holiday things that need to get done this time of the year. It can be very hard and can wear you out very quickly. I just try to pace myself the best I can and do a little bit every day so I am not pushing my self too much.

 

Happy Holidays!

The Miller Family

 

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6 years (or 2190 days, 312 weeks or 72 months if you’re counting)

Today it will be 6 years (or 2190 days, 312 weeks or 72 months if you’re counting) since Neuromyelitis Optica (NMO) tried to take over my life.

I hate this anniversary.

Every year as the anniversary arrives I try to stay positive and envision myself as some sort of super human. I have a lot to be grateful for (or brag about) – I’m a mom to the most energetic 3 year old, I co-own and run a successful company, I’m a wife to a talented journalist, I have best friends and I still do try crazy shit like run a 10km, snowboard and drink my weight in Chardonnay. Most nights I can’t turn my brain off so I lie in bed, completely exhausted, my body always on fire, my limbs feeling like they’re filled with lead, finally acknowledging that every fibre of my being hurts and I mentally high five myself. Ya. I destroyed today. This fucking disease has nothing on me. And then it’s morning and that egotistical voice in my head sounds panicked. What if today’s the day your feet can’t feel the ground again? What if today’s the last day you ever get to see?

This anniversary always feels like one big morning panic attack.

No matter how much I accomplish the rest of the year, I always feel so defeated on anniversary day. You see, NMO can sneak up on any day, even on one of my ‘better’ days. That is what it is to live with an incurable disease.

I wish I was a big enough person to be gracious today; to be proud that I’m surviving NMO one more year or to simply ignore the day. But you see folks, I am merely just a regular human with a learned ability to know how to fake it. Today makes me angry, makes me sad, makes me resentful. Today I’m more like Gollum, where my version wants to binge eat cheesies, eat several Twix candy bars and spend quality time with Netflix. Don’t look at me!

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If you’re feeling this is dark, don’t worry. Like during my mornings, the internal self pity and doubt does eventually end. Something always jars me back to reality – an alarm clock, a preschooler, sometimes even my own motivation. On anniversary day I do the same and wait for the inevitable life challenge to win over my self deprecation. NMO hasn’t taken over my life; It is my life and that’s a truth I’m always denying. Between the doctor appointments, the daily drugs and the consistent pain, there’s also all the good in my life. But if it’s all the same to you, today I’m gonna take my day and cover my knuckles in cheesie dust.

Summer Photo Fun

We hope you had a great summer. We’ve all enjoyed the many adventures that we encountered despite neuromyelitis optica (NMO). Here are our favourite photos of the summer:

From Lelainia

The Lloyds

My husband and I have been empty nesters for about 5 years now, so it’s challenging to come up with a photo with all of us in the same frame, especially when two of us (Carver and I) are avid photographers and prefer to be behind the lense. This group of photos was taken on Father’s Day this year, 4 days before my husband suffered a major heart attack, which makes them all the more special to me. We took a day trip to Whistler, which is our happy place and did some hiking, swimming, shopping & eating. My son spotted a selfie stick and bought it as a gift for me, so hopefully the next time we’re out having adventures together, we’ll all end up in the same frame.                                                                                                                                                                                                                                                                                                                                         From Jenna:

soph  pug  run My happy place is up north in Muskoka country at my husband’s family cottage. In Ontario, Canada, most city dwellers jump at the chance to drive several hours to the great outdoors, every weekend. We’re not as extreme but instead take a couple of weeks off. From Erin: IMG_6288 IMG_6648 IMG_6772 IMG_6826 IMG_7451 IMG_7363 IMG_7282 IMG_7264 IMG_7127 IMG_7057 IMG_6996 IMG_6921   As our summer is coming to an end we sure did have a lot of fun! We did a lot of activities as a family. I really enjoyed watching Allen being at his favorite place, which is the track. Alana is growing up so fast she no longer has the look of a newborn . Eric has been working a lot since this is his busy time of the year. The best part was just doing a lot of things together as a family. From Christine: Processed with VSCOcam with s2 preset masterchef This summer John and I did some travelling together and did a UK and Ireland trip together. This is us in front of the Cliffs of Moher.  I’m finishing up the summer as the newest judge on MasterChef Vietnam.

31
Aug 2015
POSTED BY Jenna
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