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.

TV, Travel, and the Importance of Sleep

Judgment
I just returned last week from a month-long stay in Vietnam to film MasterChef Vietnam season 3—yes, I’m now officially a full-fledged judge of the MC franchise!—and this week, I leave for Canada to film part of season 3 of Four Senses, my cooking show in Canada.

Yesterday, my cousin, who is also a doctor, called me to ask how my health was faring.

“The family is worried about you getting a flare-up because you seem to be overworked,” she said.

I did come down with the flu while filming in Vietnam, and because production doesn’t stop for anybody unless there’s blood spewing from the eyes, I still had to shoot with fever, cough, and a loss of voice. In spite of this, I have been blessed to remain free of Neuromyelitis Optica/NMO attacks.

How do I do it?

Well, first of all, it’s probably a lot of sheer dumb luck.

Secondly, having lived with NMO for over ten years, I’ve learned to monitor my symptoms quite well. I know my body can no longer handle functioning on no sleep, the way I used to in my twenties from studying (or, more realistically, partying) all night. I’ve learned that as soon as I feel pain in the back of my eye, I need to pause from life, sleep, and take it easy before a bout of optic neuritis sets in. Of course, everyone’s NMO symptoms and flare-ups manifest differently, so I suggest you keep a health journal to log what sorts of things precede your attacks, how they begin, how long they tend to last, which courses of treatment are most effective, and so on.

For me, rest and relaxation are now a top priority, whether in the form of physical sleep or mental respite. This has helped me keep countless NMO exacerbations at bay. Unfortunately, the frequent travel I do for work makes it incredibly difficult to maintain a normal sleeping schedule. On top of that, I am susceptible to poor sleep and sometimes insomnia. While I don’t recommend this for everyone, I do find a little assistance from an over-the-counter sleep aid helps me regulate my sleeping pattern, especially when traveling internationally. I make sure, however, I don’t become dependent on sleep aids—I’ll only take them when I fly overseas or if I hadn’t had good, straight sleep for several nights in a row—and I only take half or a third of a dosage. Make sure to consult with your physician first before adding anything new to your pill intake.

Many people think my life is glamorous, and while it’s pretty awesome to be able to fly to Canada, Vietnam, and Singapore in two months’ time, and to be doing stuff I truly love, keep in mind it’s still work, and it’s hard work at that. Production often has me on my feet, “turning it on” for cameras ten to fifteen hours a day for, in the case of MasterChef Vietnam, 21 days straight. Sure, this can take a toll on anyone’s health, but I prioritize health and happiness above all else, and that’s helped me accomplish much without sacrificing well-being.

14
Sep 2015
POSTED BY Christine
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Candace Coffee May you in RIP

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Our NMO family is grieving today,as we lost another family member Candace Coffee. I remember when I was first diagnosed Candace and Collin were the first videos I watched of other people having NMO. Sure was very active in spreading awareness for NMO and loved her twin boys so very much! Below is a video about Candace also a link to her Gofundme account that they have setup for a college fund. Please if you can please donate! RIP Candace.

http://www.gofundme.com/yzt34w

 

Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

Can patients living with an illness find love?

It’s Valentine’s Day this week, that overly commercialized “holiday” where we acknowledge our loved one with chocolate, gifts and heart felt (usually by someone else) cards. Love it or hate it, one might find the day difficult to ignore.

On occasion I scan the posts on the support sites and Facebook groups and every once in awhile I’ll see the gut-wrenching, heart-sinking comment from someone young who wonders if they’ll ever find love despite Neuromyelitis Optica (NMO).

I’m here to say YES! YES YOU CAN!!

I’m blessed, in fact all of us on this blog are, to have someone to share our lives with. That’s the good, the bad and yes, the ugly NMO.

Look, Valentine’s Day can make even the most beautiful, healthy, young man or woman feel self-conscious when they face the day alone and single – so don’t sweat it. The tough reality about NMO is that everything is, well, in fact tougher.
Be it cooking, walking, sleeping and even love and romance, we face hardships most will never understand. In truth, there isn’t really a good moment to tell someone you’re dating about the realities of an auto-immune disease. It’s not exactly first date conversation material…or second date…or third…The good news? Dating is tough for everyone and each person brings what some might refer to as “baggage”. I like to refer to it as being human, vulnerable and real. I like that no one is perfect.

I always wonder what it is about disease that makes people feel lesser than others. Are NMO patients of a lesser value human being than anyone else? We certainly contribute the same (and often more!) to society through our work, families and empathy to others.

So go ahead and put yourself out there. And if you choose not to do so because you’re happier alone and not because NMO stopped you.

(In full disclaimer I personally have come to adore Valentine’s Day because of discount chocolates the day after and my hopeless idealistic view of the world.)

Erin’s pregnancy update

I wanted to give everyone an update on how my pregnancy is going. The last 3 months have been challenging I have been really sick with a bad sinus infection, ear infection and bronchitis. I have been seeing up to 3 doctors a week trying to get me better but between being pregnant and having NMO I just can’t win. I am now on my fifth round of antibiotics and three different inhalers I am hoping this will do the trick. Eric has even been blessed with me not having a voice for over a week now. Other then that baby girl Miller is doing well she is over three pounds and is always moving around in my tummy. I am currently 32 weeks which is almost 7 ½ months and I have been really blessed and I have not been having any issues with my NMO I am still getting my CD 19 count checked every month by my neurologist. I got the green light this month to try to breast feed this time as long as a do some pulse steroids, I am very excited about this since with Allen I could not since I did Rituxan three hours after having him. I am hoping this time with breastfeeding I will not flare at all after having her.

These last 2 months are going to busy around here we will be moving Allen out of his room and into what use to be our office. He is joining the big kids club and getting bunk beds, He wants his room to be decorated in cars and planes. I am trying to complete this project in the next few weeks so he can get adjusted to being in a new room. I also need to start decorating Allen’s old room for baby girl and getting everything ready for her. This last weekend we went through our storage unit and pulled out all the baby stuff and the bassinett. I am defiantly in nesting mode and trying to get everything ready cause I know she will be here before I know it. I am trying not to drive Eric crazy with all the things that need to get done cause I feel like we are under the gun and I just want to have as much done as possible before she is born. As we all know your life is pretty hectic after having a baby not to mention having a three old adjust to having a baby sister now.

Thanksgiving and a Little Personal NMO History

Thanksgiving is my favorite holiday, though I often greet it with a bittersweet sentimentality. I love the quality time with friends and family, the cooler weather, the sound of football on TV, the unpretentiousness and ease (read: no gifts like during Christmas), and especially the FOOD.

But many Thanksgivings ago, for a number of them in a row, I would get Neuromyelitis Optica/NMO attacks. Perhaps it was the holiday stress, the sometimes frigid climate, or the flu season. Perhaps it was merely coincidental. Whatever the reason or reasons, it was almost no fail for four years in a row that I had with my Thanksgiving turkey either a side of optic neuritis or transverse myelitis.

And isn’t it Murphy’s Law that my attacks would come during the holidays (or once, during a hurricane) when hospital and pharmacy staff were skeletal at best? My neurologist at the time not only had cold bedside manners, but also frequently left me to dictate my own healthcare. So many times I’d have to leave multiple messages with his office saying, “Okay, my vision is getting worse. I really need the dexamethasone stat, please.”

The turning point for me came in 2007 with my visit to Dr. Dean Wingerchuck at the Mayo Clinic in Arizona. He wrote a letter to my primary neurologist recommending Rituximab infusion therapy, and after a lot of back-and-forth with insurance and Genentech (the maker of Rituxan) and a botched first infusion, I’m happy to say I’ve been attack-free for 7 years.

And that, my friends, is something to be thankful about.

My message is one of hope. I know what it’s like to be misdiagnosed and given ineffective treatments. Keep searching, and have faith you will find it. You will find the right doctor and the right treatment, and you will lead a full and fulfilling life. Take it from me.

Depending on how you look at it, my life philosophy can be viewed as either optimistic or pessimistic: I always tell myself the situation could be worse. Maybe it’s a defense mechanism, but it’s kept me sane. No matter what, life could always be worse. This is how I find the small things for which I’m thankful.

Last but not least, it wouldn’t be Thanksgiving if I didn’t talk about the food. Here are a few of my tried and true holiday recipes; try your hand at one or all. Happy Thanksgiving to all of you from us at NMO Diaries.

*These recipes are from my Blind Cook blog. More recipes can be found in my cookbook, Recipes from My Home Kitchen.

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25
Nov 2014
POSTED BY Christine
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