As I am gearing up for the next few weeks it’s going to be very busy time. First I would like to wish everyone a Happy Thanksgiving! We are traveling to Kansas to see my husband’s family this year for 4 days. This time of the year just seems like chaos for everyone till after New Year’s. As NMO patients this can be challenging for us trying to keep up with everything and trying to take of ourselves. I know for me this time of year is very exhausting and for that I need to thank Starbucks since I will be visiting them everyday till after New Year’s. Once we get back from Kansas I will be decorating the house for Christmas. I am one of those weird people that put up four Christmas trees because I love Christmas trees! Also it’s that time of the year for Elf on the Shelf to appear and this year we are having another elf joining our elf Buddy I love doing elf on the shelf even though I stress about it too much some times. The look on Allen’s face is just worth it every morning when he is looking for Buddy. The following weekend we are staying downtown for one night and will be watching the Christmas lights parade. Then it will be my 35th birthday which I am absolutely dreading to me that means I am 5 years closer to being 40. I think I will have a hard time with that one well I know I will. I recently watched that movie “This is 40.” Yes I will be like her and will be celebrating my 38th birthday for several years. Four days after my birthday I will be doing my Rituxan which we all know that’s a party in its self. Which means I will not be feeling well for a couple weeks. The next thing on my schedule is my husband’s company Christmas party. Which means Eric and I will be wrapping about twenty gifts for the Christmas party gift raffle. Also squeezing in wrapping all the gifts for the kids and family members. I am hoping I will have time to do Christmas cookies with the kids. Started this tradition with Allen ever since he was a baby. Alana was not into it last year but I think this year she will be more into it. Well at least eating the frosting out of the bowl when I am not looking. Then before I know it will be Christmas. We are staying home this year for Christmas so the kids can enjoy playing with their toys.
Even though it will be a hectic time of the year, I am very thankful for the many blessing in my life such as my family. I think we all can to relate to that when it’s the holiday time we forget what matters the most sometimes.
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.
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…)
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.
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.
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.
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.
- 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.
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.
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.
The Miller Family
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!
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.