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.

Happy 4th Birthday Allen

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Allen just celebrated his 4th birthday and I can’t be how blessed I am. When I was first diagnosed with NMO in 2009. It was a huge question if I would be able to have kids. After having three bad attacks it was hard to see having child. After meeting with two NMO doctors we got the green light to have Kids. When we started the IVF process in 2011 I knew it was going to be a journey to have a baby. When Allen was born in 2012 I couldn’t believe I did it! Despite having a very terrifying disease and all I went through I got to a very healthy baby boy.

Allen was such a good baby always happy and just had the most adorable grin. When he turned one year old I could believe how fast it went by. As a first time mom it’s hard sometimes to enjoy every moment, because you don’t really understand how fast it goes by. Allen loved cars since he was a baby but when turned one it was different game. He wanted to drive them, wash them and park them. When he turned two my mom got him a Mickey car he could sit on and push with his feet. To this day he still plays with that car. That’s his favorite car to play within side the house. He loves to go outside and drive his power wheels around the back of the house. He recently gave Alana a ride in his mustang and she was smiling ear to ear. Alana just adores her big brother Allen teacher her about cars and how to drag race. He is in heaven right now drag racing has started and he love to watch John Force. He can’t wait till the drag strip opens up for the summer. Luckily it’s 10 mins from our house. We spend a lot of time up there in the summer. I am pretty sure Allen would sleep up all summer if I let him. He is super excited cause only one more year then he is allowed to do Jr. Dragster. I am hoping I will do ok letting him race. Thankfully I am into cars and love the drag strip too.

Allen had his 4th birthday party at Jumpstreet and had a ball! That’s were he wanted to have it and he wanted the theme to be Jurassic park. He helped me pick out all the decorations to how he wanted his cake. This was the first year he made the decision where he wanted it and what the theme would be. For a week before his birthday he was telling everyone it was his birthday! Like every kid he was sad his birthday came to an end.

Mar 2016



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.

Is Breastfeeding the best feeding for me?

It’s no secret that breastfeeding provides tons of benefits to one’s child but it’s not always possible for all new Moms.  I’m indifferent to breastfeeding but in my personal opinion, the pros outweigh the cons so it has always been my hope to provide Sophie with at least 6 months of exclusive breast milk.

Throw in Neuromyelitis Optica into the mix.

My team of doctors have always provided me with excellent care but up until this moment I’m still not sure what the plan is (for the record, I’ve been breastfeeding Sophie since day  one and she’s now 7 weeks old).  During my pregnancy we discussed if I could breastfeed, what medication was safe and at what point I would have to start immune suppressant drugs but my doctors never came to a consensus so no decision was ever articulated to me.

So I did what every patient should do: I educated myself and became my own advocate.

Of course, I’m motivated to do what is in the best interest of my daughter.  Right now I’m on 20 mg of prednisone and 600 mg of gabapentin everyday, both safe (enough) for breastfeeding.  The gamble is how long I can continue this practice before I have a relapse (if it’s going to happen).  At what point do I stop breastfeeding and start immune suppressant drugs?  Will it happen and if yes, when?  If I stop breastfeeding too soon, am I robbing my daughter of necessary nutrients?  If I continue for too long, am I playing with fire and putting my own health at risk?

It’ll be another month before I see my neurologist, at which point I’ll discuss and decide then.  Even this one month makes me nervous now but I’m so busy with a newborn I don’t dwell on it.

Is there any other NMO patients out there who breastfed their kids?

The Birth of Sophie Elise Drolet

Mike and I are pleased to announce the birth of our daughter, Sophie Elise Drolet on Tuesday July 31, 2012.

On Monday night my water broke despite the fact that my due date was originally for August 20th.  We had planned with our team of excellent doctors to have a c-section on the 13th of August since we were all a little uncertain how a regular birth would affect me and my Neuromyelitis Optica (NMO) symptoms.  Would it cause a flair up?  Would I have a relapse?  Would nothing happen?  So naturally it was quite the surprise when my water broke by itself.  I never experienced any contractions so once we arrived at the hospital I was not surprised to find out that I was not dilated.  My options were 1: get induced and wait for the contractions and try for a regular birth, or 2: go straight to a c-section.  In my heart I always wanted to do a regular birth because I wanted my daughter to arrive in this world when she was ready, not when I forced her out.  Now that she did decide when she would arrive, we discussed it at length and went straight for the c-section.  The ultimate deciding factor was the word “emergency”.  If after being induced I still had to do an emergency c-section I would be disappointed and more scared than if I made the decision myself and high stress situations do affect my symptoms.  And let’s be honest: I’ve already had several more moments in this lifetime where I find myself in the hospital with the word “emergency” – thank you NMO (note my sarcasm), so I didn’t need one more.  A little part of me feels like I was a bit of a coward not trying for a regular birth but I’m calling my c-section as a safety so I feel somewhat better.

At 12:44pm on Tues. July 31st, we brought our beautiful daughter into this world.  Sophie weighed just 5 lbs 6 oz and was 18.5 inches long.

In hindsight I will admit that this has been a long journey.  There was a moment after diagnosis that I questioned if I would ever be a Mom.  Over the last couple of years I resigned to the fact that I could still enjoy a fulfilled life if I didn’t become a Mom.  I think my husband did too.  Yet, it was still really important that I tried otherwise I’d always wonder what if.  During IVF I had moments of sadness; the typical “it’s not fair” and “why me” that I questioned in private and would ocassionally find myself crying silently in the tub or under the shower.  Even now, I worry if I’ll ever be a good enough Mom when the NMO strikes.  Is it really fair to Sophie that she has a Mom who might one day have significant health issues and who went into this knowing that?  There are a lot of questions that go unanswered but I can tell you right now that I love her so much that it doesn’t matter anymore.

On day 2 we had a professional photographer stop into our room at the hospital who took wonderful photos of our new family (see below).

Thank you so much to the entire NMO community for cheering me on, believing in me and always being there when I had my doubts.  This wouldn’t have been possible without the love and support of my NMO family.




Life Interrupted (in a good way and also how it could end)

I’m currently 32 1/2 weeks pregnant and this has been a wild ride.  It has been the steepest learning curve of my life, one that I am trying not to be overwhelmed by and just enjoy.  When I was first diagnosed with Neuromyelitis Optica (NMO) I thought for sure that being pregnant was something I’d never get to do.  In truth, my family also thought the same thing and they rightfully took it rather hard.  For all the times that they showed how upset they were by this truth, I digested the painful realization and tried to be tough about it.  Being a Mom is something I thought I’d like to do “one day” but when the option was taken away it became something I had to do. 

It has been a long road with lots of doctors and guesses and medical procedures.  Since I’m in the home stretch things have started to become more difficult but it was expected so I’m trying to just manage it in strides.  I’m currently on 300 mg x2 of gabapentin, 20 mg of steroids, omeprozale (to manage all the acid reflux from the drugs), prenatal vitamins and a DHA/EPA vitamin. 

The steroids always have interesting side effects.  With a pregnancy, I was diagnosed with Gestational Diabetes (GDM) early on – steroids elleviate sugar levels.  At first I was able to manage it with diet control but as my hormones increased I eventually had to go on insulin before every meal.  Just last week I really started to struggle to move around, including walking.  Turns out I also have Symphysis Pubis Dysfunction (SPD), which in short means the ligaments in my pelvis stretched too much too quick.  If there was a competition for how many acronyms one could get through a pregnancy I would be a serious contender. 

Of course, throughout all this, life doesn’t stop, or rather in the case of my Opa – it does.  My Opa passed away just a couple of weeks ago at the age of 90.  He was the patriarch of my family and provided a silent strength that kept us all together.  I wish nothing more than that he’d have been around to meet my baby but I take comfort in knowing he lived a full life.  2 weeks before his passing my family threw him a giant reunion.  I think in a lot of ways it was a goodbye party.  My Opa felt he had a chance to see his entire family one last time so I’m glad we were able to get together.  With his passing I’m reminded of so many life lessons – lessons I’ll teach my kids and ones I should follow myself.  My brother made a great short video of our reunion, which is how I’d like to remember my Opa – happy, well fed and surrounded by those who love him.


Greetings and salutations!  I’m in a good mood, maybe because I’ve just returned from vacation or maybe because my Neuromyelitis Optica (NMO) symptoms have taken a backseat (hopefully) to my pregnancy.  My husband and I enjoy travelling but we know that realistically we won’t get to as much as before when the baby is born.  So as our last hurray we booked a trip to St. Lucia.  Always a big sun and beach fan, I didn’t realize there was a term for this last trip, BabyMoon (a rip off of honeymoon) until Erin informed me.  She also told me about a “push gift” but I doubt I can convince my husband of that one.  St. Lucia is a stunning island with very helpful locals.  The core of the island is covered in rainforest and winding roads through and around them makes for a scenic drive.  The coastlines have either white or black sand (depending if you’re close to the sulphur springs) but always pleasant on the feet.  Rich with spices like nutmeg, basil and curry, the island was inhabited by the British, French and the Africans.

Finally getting a chance to relax, we discussed what our birth plan was and some might argue more importantly, our after plan.  Right now I think of NMO as a monster in my closet.  I know it’s in there, I know it’s waiting for the right moment to jump out and wreck everything and in the mean time I hope I’ve put all preventative measures in place to battle its ugly head when it finally shows up.


So amongst the beautiful rainforest, the white sand beaches and the catamaran trips I acknowledge your existence NMO monster and I beg you to be merciful.


Currently on 20 mg of Prednisone everyday, 600 mg of Gabapentin and a whack bunch of vitamins, I hope it’s enough to manage the NMO.  A little extra secret but Prednisone actually increases your blood sugar level (amongst a whole bunch of other evils).  With a history of diabetes in my family and the prednisone it was inevitable that I’d also get Gestational Diabetes with this pregnancy.  So there I am, enjoying the beautiful sun in Castries, St. Lucia…and I’m on a controlled diet.  Will I ever get a break?!  It can always get worse but truthfully, I really struggled eating responsibly while on vacation.

Many of you have asked for pregnancy pictures.  Admittedly, I haven’t had time to get them done professionally but here’s a few from our vacation.