Enduring NMO back pain

We all know back pain but for neuromyelitis optica (NMO) patients most of us know it that much more. Ever since my transverse myelitis (TM) attack in 2009 I’ve known serious back pain to be part of my every day existence.

I recently threw out my back with an awkward twist. There was a small pop noise and a shot of pain and then it subsided to something manageable, or at least I thought. Over 2 weeks I took it easy and figured with a little rest it would recover back to my normal. But it didn’t happen and after a few more weeks where it really affected my every day tasks like cooking in the kitchen, sitting at my desk or even walking, I had to ask for help.

I’m currently undergoing physiotherapy treatments for a serious case of sciatica nerve pain and a rotated hip but what else I learned about my body shocked me.

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In this first x-ray image we found not one but two fused sections of vertebraes in my neck, a genetic defect that unfortunately nothing can be done. But it certainly helps explain my forward head and poor posture, which trickles down to lower back pain to compensate the weight of the head.

In the second image it’s very clear I suffer from scoliosis. There are two types: acquired (from poor habits that can be improved) and genetic (that nothing can be done and that’s evident if the scoliosis is found in the lower spine as well). As it turns out I’m just lazy so I’m needing to re-train myself on how to sit properly and I’ll be taught how to undue my acquired scoliosis. 

In the third image we see my hip rotated (it’s smaller than the other, which is how we can see it isn’t sitting correctly), but we also discovered poor spacing between my vertebraes. The gaps between vertebraes should increase the further we go down the back but mine does the opposite. The disc that cushion impacts have also diminished. No one knows why my spine looks like this but at 35 years of age it could be anything from major impact falls, pre-arthritis, poor bone density or in my case repetitive high dose steroids that have deteriorated the quality of my spine. Oh, and it could have something to do with those awkward lesions left over from the TM attack.

As part of the treatment I’m seeing a chiropractor, physiotherapist, athlete specialists, massage therapy, and eventually kinesiology all working with the same clinic, Rosedale Wellness. I’ve been blessed with this incredible team of professionals who are taking a holistic approach to my recover but more importantly my long term sustainable spine health. It hasn’t been easy though. The treatments leave me dazed because my body isn’t familiar with the new posture setting. The sciatica hip pain is relieved temporarily but as I return to life it slowly returns. And the time commitment to good health is something I’ve had to decide I will stick with until the team feels I have enough tools and recovery; As a mom and entrepreneur I’ve had to off shift my responsibilities and that’s resulted in late nights as my new norm. 

For NMO patients who think back pain is something that just comes with the package I recommend speaking to qualified specialists because it might not be the case for you, just like it is starting to be for me.

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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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.

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.

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