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Noelani’s NMO Story – Ignition

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Hi, my name is Noelani. I am 30 years old, was born and raised in Hawaii but currently reside in Nevada!

Looking back, there were signs throughout my childhood of NMO, bowel/urinary incontinence, spurts of tingles, and needles in my extremities. In my early teens, I had episodes of numbness in my left arm and vision loss in my left eye at 15.

I honestly thought nothing of it; it was just something that happened in life. I couldn’t explain it and didn’t let it hold me back. I was an honor roll student, training to be in the military for military intelligence and working on moving out on my own.

I suffered a miscarriage, and afterward, the vision in my right eye started to blur and dissipate.

I went to see doctors. I went to specialists. I even went to one of my local emergency rooms, where I was admitted. They discharged me and sent me home without running any tests.

After being questioned by many doctors, a couple of them actually told me I was lying and making it up. I wanted to give up.

I was helping to take care of her family while starting to build my own life. I went from being completely independent to being someone who couldn’t go from my room to the bathroom without assistance. I was confined to my home without assistance and truly had no idea where to go, who to see, or even what to ask. I was defeated

And after a very personal life obstacle, I found out I was pregnant with my son.

The pregnancy was very rough; neither of us was expected to survive the delivery, but we proved them wrong. He was born at a healthy 7 1/2 pounds.

After going home, I noticed different physical changes that I equated to pregnancy hormones and my body “going back to normal. “

At my postpartum appointment, I let my doctor know that I had been having numbness and tingles in my left arm, sensitivity on the left side of my head, and sores on my left ear for the past few weeks. The entire left side of my body was excruciatingly painful. She advised me that this was not her area of expertise and I should consult a neurologist to check everything out.

After leaving the appointment, I went to the ER to get checked out. Because of the numbness in my left arm and extreme pain in my head, they did a CT scan and gave me a pain shot. They said they couldn’t find what was causing my pain and discomfort and sent me home.

After coming home and resting for a little bit, I went out for a walk. On the way home, I noticed that my right leg was starting to have patches of tingles. My family and I decided that we would go back to the ER the next day if it persisted.

The next morning I woke up completely numb and tingling from head to toe except for my right breast and right arm.

It took me a little bit to get to the ER and be admitted, but once I did, we were able to do testing, and on March 6, 2014, I was diagnosed with my NMO.

I had never heard of this disease; I hadn’t ever really heard of an autoimmune disorder either. I was the first person in my family to ever have anything neurologically wrong with them, and it’s been a journey ever since.

I was training for obstacle courses; now, I was a new mother whose doctors were telling her:

“You’re the youngest case that I’ve ever seen. “
“You’ll never walk again. “
“You’ll be wheelchair-bound for the rest of your life, “
“You will never have a normal life with your son. “

Those last two shattered my soul. They also ignited a fire.

I went through steroid treatments, plasma exchange, blood transfusions, and anything you could think of to try and control my symptoms, but nothing was working. I was on daily oral steroids, daily immunosuppressants, stool softeners, painkillers, anti-inflammatories, and acids. You name it, I probably had it.

And after two years of being on these medications. Going through all of the treatments. I found out that I was borderline organ failure and had a positive ANA (Antinuclear Antibodies) test result for a second autoimmune disease.

I went to every specialist possible and did every blood test and test possible. We still could not pinpoint what my second autoimmune disorder was. They finally gave me a second diagnosis of multiple sclerosis (MS).

It’s a daily challenge, yet at the same time, it’s a daily blessing for me that I don’t take for granted. To be able to be active with my son, to be able to control my symptoms through fitness and nutrition, to be able to really live the life I want to live, it’s something I work on every single minute of every single day.

I was never determined to prove my doctors wrong, but I was always determined to be able to walk alongside my son. To be as active as I possibly can with him, in whatever capacity, is a blessing.

I have to make adjustments and do things differently. But I will tell you I have one of the sharpest memories, keenest ears, and biggest hearts.

I have to make modifications, but I’ve learned that I don’t have to modify my character for anyone, even myself.

Every day is a blessing. Every day is a new beginning, an opportunity. I am thankful that through fitness and nutrition, I can help inspire and motivate other #AutoImmune Warriors to keep pushing forward and not let their diseases hold them back!

We can still be business owners!

We can still be obstacle course running athletes!

We can still be true to ourselves while dealing with something we truly never expected.


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