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.

xoxo

Jenna

 

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.

Babymoon

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.

xoxo

Jenna

 

I’ll Let You In On Our Secret…Finally

After more than a year of doctor appointments, strategizing the best plan, endless guidance from Erin Miller (and other patients) and a whole lot of patience, my husband Mike and I are pleased to announce that in August 2012 we’ll be expecting an addition to our family.

 

Living with Neuromyelitis Optica (NMO) I’ve been really nervous how this will all work so I’ve hesitated sharing the news with everyone.  But trust me, I’m super thrilled and really wanted to shout from the rooftops.

The process to get pregnant was lengthy but we got the end result we wanted so I’d do it again in a heart beat.  Having NMO, it was obvious that we’d have to do in-vitro (IVF).  At first it took some convincing to get all my doctors on board.  With very limited information available on how NMO and pregnancy work together, we all had to assess the potential risks.  I’ve been on Cellcept for over a year so we had to strategize how to get me off these immune suppression drugs, allow it to get out of my system while going back on Prednisone to provide me with some protection – then pray.  Yes, I did a lot of praying that I wouldn’t suffer from another attack during the transition.  While we did the drug transition we also had to do all the standard tests for IVF.  Finally we started the IVF process in early November.  Every day my poor husband had to inject 3 needles into my stomach.  You’d think after all the needles I’ve received living with NMO that I’d be ok with them but I’m more terrified of needles now than before.  Almost every morning I went for an ultrasound to check on how well my body was producing new eggs.  When there were enough, we did the extraction and 3 days later, only 1 lonely egg survived that we implanted.  It took 2 weeks sitting and waiting and thinking the entire time that I was potentially growing another human being inside of me.  Stress is a major contributor to my NMO symptoms so I took walks, did a lot of reading and tried to cook new recipes (I’m no where close to being as talented in the kitchen as Christine Ha).

I am now 5 months pregnant and it’s everything everyone says it is – it’s magical, uncomfortable, surreal and life changing.  I can’t help but worry like other new parents about normal stuff like technique, money, and lack of sleep but occasionally I’ll also allow myself to worry about my NMO.  Will my symptoms come back with a vengeance after delivery?  Will I suffer from another major attack?  Will I be able to keep up with a toddler one day?  I won’t be an advocate and tell other NMO patients that they can get pregnant if they want.  Every case is different and you’ll have to work hard with your team of doctors to discover what’s best for you.  What I will say is that if getting pregnant is something you want to do then definitely investigate it.  I never like to say no to an opportunity and I’m sure glad I didn’t this time.

 

Jenna

 

The Baby Question

At my age, most of my peers are either thinking of having children; pregnant; new mommies; giving birth as I write this; or raising one, two, three, four children of their very own. Everyone who reads this blog knows that Erin is expecting. And just earlier this week, I visited one of my best friends who had just had her first baby last Thursday. That almost everyone around me is thinking, talking, breathing babies is, to me, an understatement.

Some girls know they want to become a mother as soon as they knew how to pretend-feed and burp their Cabbage Patch doll. These girls are motherly by nature, and they grow up to become women who nurture their nieces and nephews and their friends’ babies, even strangers’ children, as if it were second nature. These women never once have a doubt in their mind that they were meant to be mothers.

I am not one of these women.

Sure, I played house at age five, but I always played the role of the bossy wife and dog-owner. I might have had a doll pretend-asleep in the crib, but it was probably lying face down pretend-suffocating. And I never, ever bothered burping it. I probably never changed its pretend-diaper either. I held an empty bottle up to his hard plastic lips once in awhile, but quickly grew bored with the doll and simply tossed it aside to return to my pretend-stove which I found much more entertaining. And that was the extent of my playing house–the baby came tertiary to everything else.

Having gotten married last year and turned 32 several months ago, the Baby Question (or should I call it Dilemma?) has inevitably plagued my mind. I have never been a mothering type. I am awkward around babies–I only like them when they are newborn and don’t do anything but sleep and poop–and even then, I prefer to hand them off once that putrid odor comes seeping out of their tiny diapers. And as soon as the newborn starts crying, see you later! Toddlers can be cute when they imitate their parents, but often they run wild, and I (being the old hag that I am) just can’t handle their rambunctiousness. Older children are a little easier to talk to, but I find myself still addressing them as though they were my age: “I thought Ariel’s character was too archetypal and the narrative arc of her journey from fish to human too predictably tragic. What did you think?” I should just stick to asking them what their favorite Disney movie is and why. Or maybe just the first part of the question–the “why” might even be too much.

Prepubescent adolescents and teenagers are a bundle of hormones, and I also cannot relate to this age group. It seems the only people I feel comfortable around are 22 and up. If you can’t get into a bar, you and I can’t have a conversation.

And thus lies the Baby Question: to have or not to have? Because I am not a lover of children, I’m not quite sure if they’re in my future. At the same time, I can hear my biological clock ticking away in my ovaries, and my fear is one day waking up at age fifty and suddenly craving that sweet nectar of motherhood when it’s too late. I guess one can always adopt–something John and I have talked about but not at length–but with Neuromyelitis Optica/NMO, I don’t think it’ll be in my nor my child’s best interest to push myself too hard. Raising a child is hard enough; I just don’t know about doing it blindly (literally) at age 50.

My doctors have told me I still have a few years to make that decision, but it seems so much more impending when everyone around us is asking when it’s our turn. The truth is, I don’t know if it’ll ever be our turn, and both John and I are okay with that. Parenthood is not for everyone, and there are other things in life that can and will sustain our joy. I am not ruling out motherhood, but for now, I can finally say for the first time in my life that I am right where I’m supposed to be, and I’m completely fine with that.

24
Aug 2011
POSTED BY Christine
POSTED IN

Real Life Hurdles

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