8 years living with NMO

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

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

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

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

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.

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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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.

NMO and Pregnancy – A Patient’s Perspective

Both Erin and I have had successful pregnancies so we’re often asked how exactly we’ve done it. Truth is, no one really knows how we got so lucky (as we all know NMO is so unpredictable) but we did work with a great team of doctors, understood what we were getting into and built a plan that we think helped us stay on track.

Here’s our disclaimer: we are not doctors or ever think our opinion is superior. Pregnancy and NMO is not for everyone. This documentation is meant to provide insight into our journey and what we learned along the way. It’s meant as an external resource for those with Neuromyelitis Optica (NMO) who are considering pregnancy.

Q: I have NMO. Can I get pregnant?
A: Maybe. The reality is that there just aren’t enough documented cases of patients with NMO and pregnancy. There have been some successful cases, like ours and there have been some unsuccessful cases that have resulted in miscarriages and major NMO attacks.

Q: When is the best time for us to try getting pregnant?
A: Ideally you want as much time between your last attack and when you become pregnant. The longer time you provide your body with stability, the better. Our doctors recommended we wait several years before we even started the conversation about pregnancy. This is a conversation that should include your entire team of health care providers.

Q: I’m on a lot of medications. Are they safe for a pregnancy?
A: All immune suppressant medication, including Cellcept, Rituximab, and Imuran are classified as unsafe for pregnancy. Logically speaking, these drugs are meant to slow down an immune system, which doesn’t make sense for an unborn child who is developing an immune system inside you. There are several programs often affiliated with your local hospital that will help you determine which drugs are safer than others for use during a pregnancy, but remember, no drug is 100% safe during a pregnancy.

Q: But if I come off my medication won’t I suffer from another major attack?
A: Possibly. Ideally you want to wean off all unsafe medication (like immune suppressant drugs) and ramp up a suitable substitute (like prednisone) to provide you with some protection while you are pregnant. Only you can determine if you’re willing to take this risk with your body.

Q: Can I still try to get pregnant the good old fashion way?
A: You could but ideally you want to minimize the amount of time you are without the best treatment to protect you from another NMO attack. That’s why both of us decided to pursue in-vitro fertilization (IVF). That way we were able to time exactly when the unacceptable drugs were out of our system with a close date to when we would ideally be pregnant. Talk to your doctors to see if IVF is an option for you.

Q: What happens if I have an attack during my pregnancy?
A: This is something you’ll need to discuss as part of your plan and is very personal to you and your family. You’ll want to discuss your wishes with your team of doctors beforehand so everyone knows what you want should you experience an NMO attack during your pregnancy.

Q: Who should follow me medically while I am pregnant?
A: You’ll want to continue working with your existing medical team as they’ll be familiar with your history but you’ll also want to consider a high-risk obstetrician as some medication, like prednisone, can create additional problems like gestational diabetes, during your pregnancy.

Q: I’m worried about the delivery. Are there special considerations for patients with NMO?
A: It will depend on your wishes and what recommendations your team of doctors will make. Typically, if you’ve had a transverse myelitis (TM) attack you may want to consider a c-section to eliminate any extra pressure on your spine during delivery. Make sure you meet with your anesthesiologist beforehand to identify where the problem areas exist on your spine should you need or choose to get an epidural.

Q: My doctor wants me on my medication right after delivery but I really want to breastfeed. Can it be done?
A: It will depend how your pregnancy goes. If things go well you might have the option to delay your previous course of medication long enough to breastfeed for a period of time. Voice this desire with your doctors to build it into your plan. If you suffer from extreme symptoms or worse, an attack, during your pregnancy you’ll likely want to pursue the best treatment plan available as soon as possible so you can make sure you’re there for your new addition to your family. From our perspective we both chose to breastfeed for as long as it was safely recommended by our doctors – aside from all the regular benefits of breastfeeding, it also helped prolong the feeling of pregnancy for our bodies and allowed for a slower transition from pregnant to not pregnant, providing the opportunity to adjust.

Q: I’m worried I’ll gain a lot of weight during my pregnancy and will struggle to lose it once I start my treatment plan post-pregnancy. 
A: Like all new moms weight loss post pregnancy is a challenge. Build it into your plan to work with a nutritionist and set realistic goals knowing that movement isn’t always the easiest for NMO patients.

Q: Having NMO is already an emotional roller coaster. Can I handle a pregnancy?
A: Only you can answer that. Don’t get pressured into a pregnancy if you aren’t sure you can emotionally handle the unknowns and/or if you do not think your body can handle such physical changes. Be sure to have a positive support system available during the planning process, your pregnancy and available to assist post pregnancy. Be sure you talk through and agree on a plan for worse case scenarios.

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.

5 Years Living with NMO

Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.

Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.

It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.

Our Cruise Vacation (and the chain of horrible events)

For those who know me well it’s no secret how much I suffer from wanderlust. On days when I need a quick distraction I surf the Internet for “vacation porn”, shopping for deals, reading reviews and stalking friend’s Facebook pages for travel photos. So naturally I was thrilled our family, including my mother in law and her friend, were taking a cruise on Royal Caribbean. Now, I’m very grateful that we are fortunate enough to even get a chance to go but so many horrible things happened it was beyond comical. I don’t cry when my neuromyelitis optics (NMO) acts up but a bad vacation will actually bring me to my knees.

Thurs prior to leaving – Sophie comes home with yet another sinus infection.
Friday prior to leaving – I catch her infection…again.
Saturday 9am – Mike checks us into our Air Canada flight for Sunday 9:30am flight.
Noon – news reports poor IT shuts all computers down at our airport.
5pm – we double check flight status for the morning. Website states flight is cancelled.
5:01pm – Air Canada site won’t allow rebook, reservation line is busy, travel agent didn’t even get alert it was cancelled. Advised by travel agent to “just get to the airport”. Alert those travelling with us to hurry.
5:15pm – rush out door. Arrange cousin to meet off highway for dog hand off.
6:30pm – Mike begs counter for last flight to Florida, to Ft. Lauderdale, 3 hours from port of call. No room on any flights to Florida tomorrow.
10:15pm – after several delays, flight finally leaves. Sinus infection feels like my head will explode with flight pressure.
Sunday 1:30am – Ft. Lauderdale at car rental. Their computer system is down too! Wait in short line for long time.
2:30am – leave for hotel.
3:30am – Sophie finally settled for the night. I must send work emails, research baby store since we left the stroller in our hurry.
9am – leave hotel for breakfast, buy new stroller, hit drugstore for cold meds, drive 3 hrs to port and return car rental.
Monday (day 2 of cruise) – Sophie projectile vomits at dinner. Super sick. People give mean stares.
Tuesday (day 3) – I am projectile vomiting from both ends.
Wednesday (day 4) – it is obvious we have a virus. Push through St. Maarten port.
Thursday (day 5) – quietly sick in public stall onboard overhear 2 women speaking that their husbands and son have virus with similar symptoms to Sophie and me.
Friday (day 6) – 3rd port of call, Cococay, is cancelled due to rough waters. Sophie is a nightmare as she is clearly miserable.
Sunday 7:30am – get through US customs faster than anticipated disembarking. Car service to airport I ordered not there yet. We stand in cold.
8:50am – car service finally arrives. We are frozen.
10am – we just miss earlier flight to Toronto. Our 1:15pm flight delayed by 1/2 hr.
2:40pm – flight delayed several times before finally leaving Orlando.
Late evening – Mike now sick. It is definitely obvious a virus was onboard.
Monday next morning – all 3 of us are still sick. I work from home. Find out best friend’s Grandpa passed away and other friend’s Dad had heart attack while away.

Despite all that (and more that just isn’t appropriate for a public blog) we did take some nice photos that offer a perception that we had a lovely time. I think it’s safe to say we won’t be travelling any time soon as we’re happy to sleep in our own beds.

This is us on formal night…right before Sophie became horribly ill all over our formal wear.

 We’re both horribly ill here but that didn’t stop us from enjoying the sun and surf.  

Sophie on a nature conservation tour in St. Thomas.

Share your NMO Experience

I have this overwhelming urge to apologize to you all for our infrequent posts but Erin, Christine and I are doing exactly what we encourage on this blog – to live life to the fullest despite having NMO (Neuromyelitis Optica).

Erin’s son Allen is a toddler now who is full of energy and eager to melt your heart. Recently Erin planned his first birthday party with a guest list of over 60 people! Post pregnancy, Erin has struggled with her NMO symptoms and tried her first round of PLEX (aka plasma exchange) with some success. You might catch her on the various NMO support groups on Facebook.

 

 

 

 

 

 

 

With her win of MasterChef, Christine is (reluctantly) our new poster woman for NMO. After her win, she’s been touring all across the US to be on various talk shows and recently travelled to Vietnam to be on their production of MasterChef. Look for her cookbook to be released May 14th.

Buy her new cookbook here!

 

 

 

 

 

While I’m still enjoying my maternity leave with Sophie (in Canada we get 1 year), I have also returned to school online to complete my marketing degree, am focusing on my health by way of obsessing over working out and am in talks for a special project that I’m unable to speak about right now. As a new family we recently travelled to Mexico and Whistler, BC.

 

 

 

 

Since we are out exploring our great world (and we’ll continue sharing those experiences) we thought it might be great to put a call out to other NMO patients to join us. We’re looking for guest bloggers to share an experience on NMO Diaries. You can write a blog, do a video diary or be interviewed by us. So share your MS walk, running a marathon, recovering from an attack or any other experience that excites you. Email your interest to nmodiaries@gmail.com.

First Family Vacation

Mexico is a very special place for me. It’s where I first travelled alone without my family.

It’s also where Mike and I were supposed to get married. We wanted a beautiful beach wedding at the El Dorado Seaside resort. 6 months before the wedding date we travelled to meet our planner and had a pre-honeymoon. Then a month later disaster struck. I was hit with my Transverse Myelitis attack and all hell broke loose. We called off the wedding until we figured things out.

Mexico is also where we went when I was horribly sick and we needed to retreat (we stayed at the El Dorado Royale). Overweight from the steroids and our spirits broken, we hashed things out. Coincidentally during that trip it poured rain for 6 of the first 7 days, almost as if the heavens above we’re also crying with us.

So it was more than fitting that our first family vacation be to Mexico where we could create new and happy memories. This time we stayed at the Azul Beach Resort (a sister property to the previous ones we’ve been to). Almost exactly 3 years from when we were supposed to be married, I sat in the beach cabana with our little angel Sophie. As I reflected on how many things Neuromyleitis Optica has taken from me, the one thing I’ll never lose is my ability to believe that everything happens for a reason.

 

Check out this video of our trip to Coba, one of the Mayan Ruins.