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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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.

Shattered

Friday, I was tlelainia08idying up in my studio and I smashed a vintage candy jar. It slipped right out of my hands. My hands are failing me right now. I am struggling, even typing this. As an artist, I can’t tell you how scary that feels. I had 3 days of IV steroids last week and I feel shattered, just like that candy jar.

Right now, my throat is raw from acid reflux, which I get every time I have steroids. I have doubled up on the medication that’s supposed to protect my stomach, but once again, it’s just not enough. My stomach is raw. I can’t eat or drink without causing pain. I am so thirsty, but drinking just makes things worse. I feel like I have strep throat and it hurts to talk. My vision has been blurry off and on and I’ve had some horrendous headaches.

Yesterday, I took my dog to his annual vet appointment. When we came home I decided to lie down for a nap…I woke up 5 ½ hours later. The whole day just blew by. I was up for a couple hours (long enough to check in with my husband who’d been at work all day) and then crawled back into bed. I lost track of how many hours I slept.

Sometimes the best I can do is survival mode. It’s not by choice and it’s something I am still working on adjusting to. I’m sharing the truth of this moment (without wanting to sugar coat it) so if you’re living with NMO and struggling right now, you’ll know you’re not alone. I’m right there in the trenches with you, fighting for all I’m worth. We may be bruised and battered, but I promise you, we are unbowed.

 

 

 

 

 

11
Aug 2014
POSTED BY Lelainia Lloyd
POSTED IN

Everyday life, NMO

DISCUSSION 6 Comments

The State of Me

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May has been a trying month. At the beginning of the month, I had to have a round of IV steroids. Day one went okay. When my friend Nancy Reimer heard I was having treatment, she offered to come hang out with me and brought me chai. My friends have always been so great about keeping me company when I have infusions. Nancy and I had a nice visit and talked about the NMO 5km walk/run that is coming up in the beginning of June.

Day two was a disaster. I had a hep loc in and so when I arrived for the second round, the nurse just hooked me up. I sat quietly reading an e-book. About ½ hour into the infusion, I just happened to look down at my arm and realized the IV line wasn’t plugged in! It had become disconnected and there was a giant puddle of steroids all over the floor beside my chair. I jumped up and cranked the little flow regulator on the line, shut the electric pump off and then went in search of someone to help me. I was the only IV patient that day and my nurse had hooked me up and then vanished. It took me about 5 minutes to find someone who could track down my nurse. The nurse ordered another bag of steroids and I had to start all over. She hadn’t screwed the IV line into the hep loc properly. ARGH!

Day three, it was a struggle to get up, get dressed and make my way to the hospital for the final dose. I was feeling the effects of the steroids and it wasn’t good. I thought I had done my due diligence in making sure I had the right meds to protect my stomach from the steroids, but apparently not. This time they weren’t strong enough and even though I doubled my dose, I was in excruciating pain. I felt like I was getting an ulcer and my throat was absolutely burning and raw. (The joys of steroid induced acid reflux!) The pain was so bad, I couldn’t eat or drink anything, which wasn’t helping matters. I ended up going to see my family doctor and she wrote me a prescription for a stronger medication which ended up costing a small fortune. ($96!) It took several days for the pain to subside and my throat to heal.

Meanwhile, I was utterly exhausted. The day after my last dose of steroids, I had an event to attend. I went, but honestly, that evening was a blur, both literally and figuratively. I honestly couldn’t tell you what the artists who were giving presentations said. The only thing that stands out for me was that I met some really nice people-that and the fact that at this point, my vision started to go wonky. I came home and spent the next 5 days practically in a coma. I slept for hours on end and could not get out of bed. No matter how much I slept, I just felt completely drained.

It’s now been 3 weeks since my treatment and I can’t say it’s helped me any. I still have this zapping electrical buzz down my left leg constantly. My vision has been very up and down. The crushing fatigue I had right after the steroids has mostly resolved-I always have some level of fatigue, which I think is from being on a fairly big dose of Imuran, which for me acts like a sleeping pill.

In my history of being treated with steroids, I can’t say that I’ve ever had the kind of results they are supposed to have. It’s in no way a magic bullet for any of the symptoms I’ve had. What I have noticed is that each time I have steroids, the side effects seem to get worse and it’s that much harder to recover. It’s not a good trend.

I know we all want a cure for Neuromyelitis Optica but in the meantime, I wish we had better treatment options for it too.

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.

Its been 3 years already

Last Saturday was my 3 year anniversary of my first major attack of Transverse Myelitis. As the anniversary approaches I go through a range of emotions including:

Sadness (wow, its been 3 years),
Anger (I can’t believe this is my life!),
Pride (look how far I’ve come),
Denial (see sadness and anger),
and even Guilt (I’m so sorry to my family).

I wasn’t sure how I’d feel when the day actually arrived. Would I sulk under the covers? Act overly happy to compensate? Pretend it wasn’t a big deal?

In the middle of the night (after putting Sophie down from one of her feedings) I privately acknowledged this day by starting to write this blog post. I could hear my husband snoring beside me, my dog snorting at the end of our bed and my baby cooing in her bassinet and I thought, I’ll be okay. Having Neuromyelitis Optica (NMO) isn’t a perfect life, in fact, it’s one I’d rather not have but it’s mine nonetheless. So on this anniversary I will take ownership of this life, including all the ugly parts. Sure, there is more hard work for me than the average person (with the baby weight and steroid combination I currently hate myself in the mirror daily), but there is also so much I’m extremely grateful for (check out www.happyrambles.com where you can document your daily thanks).

The rest of the day went by like any other average Saturday. We shopped at the local market, I took an afternoon nap, worked out and then an old friend and her new husband came by for dinner and wine. Giving myself permission to make this day a big deal if I wanted to made it quite the opposite – just another day. I’ll have to remember that for next year.

What do you do on your NMO anniversary?

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?