So Many Pills

I know it’s a gripe that I share with most NMO patients – having to swallow a lot of pills several times a day. I organize my medication in a daily pill organizer. Because it has become part of my daily rituals, I find myself often second guessing if I even took them today. Being able to check my pill organizer answers that question.

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Weaning off of breastfeeding

At first I was indifferent to breastfeeding my daughter. I had read all the studies that encourage feeding and the benefits so I knew I wanted to give her that time, but to me I didn’t get what all the excitement was for. Our start was rough – my daughter wouldn’t latch on properly and I grew very frustrated. I invested in a specialist for breastfeeding who gave us great tips but no real resolution other than hard work. Our goal was to make 6 months before switching to formula and solids.

Then I saw my Neuromyelitis Optica (NMO) doctors…

My rheumatologist manages my Cellcept and Prednisone intake. If it were up to him, he would have wanted me back on the immune suppressant drugs right after birth. That we managed to go 3 months of breastfeeding is great but I’m playing with fire. Even though I’m on Prednisone I could have a relapse attack at any moment.  No one really knows if my prescribed dosage is sufficient to ward off an attack.  He made a valuable point that my daughter would rather a functioning mother than a couple extra months of feeding.  He was also greatly concerned with how much and how long I’ve been on Prednisone for.  I have been taking an oral dose daily since over a year ago when we started the in-vitro process but there is no denying that the long term effects of steroid use is damaging.

Then I saw my neurologist and we thought of other options:
What about Rituximab? There isn’t coverage in Ontario for the use of that drug for NMO patients. Even though I could get it donated from a drug company, getting someone to monitor and administer it to me would be difficult.
What about other immune suppressant drugs that were safe for breastfeeding? I didn’t tolerate Imuran last time and why mess with something that obviously works well?  He thought it best to stick to Cellcept.

So, I resigned to the fact that on a certain date I’d start taking Cellcept and give up breastfeeding.

And then something magical happened. Just as I was ready to wean off the Prednisone (from the last year of use) and get back on Cellcept I discovered what everyone was talking about.  I guess when you take something away, like the ability to walk, see or even breastfeed, one can’t help but really see its value.  As I count down the days before I finally make the call and give up breastfeeding for good I cherish the moments that my daughter and I share together.  Those are the moments I finally feel like a mom.  Thankfully she’s taken to her formula meals via a bottle quite well.  Most days I feel like an insufficient mother because I can’t continue to feed my child as mother nature intended.  At moments I curse this frustrating disease and even after so many years now I still question “why me?”.

So for now I am grateful for getting as far as we have – after all, I did have a baby against the odds of in-vitro and NMO, and we did breastfeed for almost 4 months.

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.