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Ronae’s NMO Story – God & NMO

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

It was December 2019. I struggled almost every day with tension headaches (eyes and nose). My primary care doctor suspected I had migraines and prescribed me with migraine medication. I don’t like taking medication (never have) and stopped taking the pills after two days. I chose to fight the headaches…

On Christmas Eve, I noticed a blurred spot out of the corner of my left eye as well as pain with eye movement. I called my doctor again for another appointment. My husband, Matt, took me to the doctor who thought that my symptoms could be caused by stress. It made sense considering it was the holidays and I have six children.

He prescribed a couple of tranquilizers to help with the tension and stress. The medications definitely helped me relax but my eye was actually getting worse. Then, I began to even see spots of gray with escalating pain.

On December 28th, just a couple of days after seeing my doctor, I woke up and seemed to have only about 20% of my vision. I also experienced a sharp, stabbing feeling in my eye. Touching my eyelid made the pain worse. I contacted my doctor immediately and was advised to go to the emergency room.

Matt took me and we were both amazed at how the hospital visit, which should have taken several hours, only took about 2-3 hrs in total. There were so many people in the waiting room but it was if I was the only one there. They brought us back right away. I could sense their concern, which only made me more nervous. I thought to myself, “this is definitely something serious.

However, the MRI scans and labs came back normal. While thankful for the good results, I felt uneasy knowing that something was not right. Out of precaution, the emergency room doctor referred me to an ophthalmologist. The following morning, the eye doctor did a quick color vision test (and a number of other tests). The color red did not look red; it looked like a very light pink. These tests were frightening because they indicated how bad my eye had gotten.

The ophthalmologist diagnosed me with optic neuritis. He was concerned that it could be caused by an underlying issue like multiple sclerosis or NMO. His exact words,

“now there is another disease called Devic’s Disease but I’m sure you don’t have that. It’s very rare.”

He referred me to a neurologist. The following morning, the neurologist confirmed the optic neuritis diagnosis. She also ordered blood work and three days of steroid infusions at my home. The steroids worked. My pain subsided fairly quickly and while not right away, my eye improved a bit. Until, I went to my son’s basketball game a couple weeks later. The very bright lights made me realize that my vision was not the same as it was before my attack. I’m unsure of the damage that was caused but I’m thankful because there are days that I don’t think about my eye so obviously it’s better and the eye pain is gone. But, certain places and certain situations, remind me of my attack and that my eye is still not 100%.

At the end of the day, I’m thankful. I’m especially thankful for my husband, Matt. He has been right by my side through the entire ordeal. He has taken the best care of me and our family. He has such a loving heart. I’m not sure what I would do without him. I’ll never forget, each night after my infusions, he’d stay up at night to make sure I was okay. We both had no idea that our world would be forever changed that night we walked into the ER. In fact, we left the hospital relieved because of the normal MRI scans and lab results.

A few days later, my lab results returned. I will never forget that day. It was the day I learned about NMO. I tested positive for neuromyelitis optica. The ophthalmologist was wrong; I do have the rare disease they refer to as Devic’s Disease also known as NMO.

I was scared and heartbroken. As I conducted my research on NMO, I couldn’t believe that this was my reality. This was such a rare diagnosis and questions were flooding my mind. Many of those questions have been answered but I come up with new questions almost every day!

Thee neurologist quickly put me on a preventative drug to be taken indefinitely called CellCept that I take twice a day – something extremely hard for me to accept. I was never the type to take medicine and now, I have no choice but to take them to prevent another attack. I still struggle, thinking that I am suppressing my immune system every time I take those pills. The hardest thing is to know that it could be for the rest of my life. I’m only 38. Indefinitely! Really!? Can that be right!?

Thankfully, we serve a sovereign God and my hope is not in my circumstances but in His word!

I’m currently in my third month living with NMO. My vision is about 95% and I praise the Lord for that. This has not been easy and I know taking preventive medicine does not guarantee that I won’t have another attack someday. According to the statistics, it’s highly likely that I will have another attack. But that is in the Lord’s hands.

There have been many dark days and tears. I know there will be more but I’m reminded that I am not my own. I belong to the Lord and NMO has only reminded me of that truth. God is my comfort and joy. The Bible says our days are numbered and we cannot add a single hour to our life by worrying (Matthew 6:27). So when I worry, I remind myself of this verse.

Our lives have changed and some things certainly for the better. NMO has reminded me of the simple blessings in life that all of us often take for granted. My growing children, my doting and caring husband, my relationship with my mom, and my love for the sun! The list goes on.

Another silver lining is that my eating habits are healthier than ever before. I’ve been a full vegan for three months and feel great! I was told that patients gain a lot of weight on these medications but I’ve actually lost weight! I also enjoy taking my daily vitamins (approved by my doctor) and knowing that I am putting things in my body that are good for me. This helps me mentally offset those nasty horse pills (lol) and the potential side effects.

My neurologist mentioned switching to Rituxan infusions from CellCept – we are waiting on insurance  approval and the end of this COVID-19 pandemic. While up in the air, the infusions seem like a better option for me. Just when I was thankful the flu season was coming to an end, COVID-19 shows up. I guess the world now somewhat understands my world of constantly washing hands and avoiding people who are sick.

Are there tired days? YES
Are there days when I am sad? YES
Are there days when I don’t want this disease? YES

But, all of this is a reminder that God is in control and I am not. I don’t know what is ahead but I’m thankful God knows.

I heard a doctor say that NMO happens to 1 out of 100,000 people. I told my husband, “I guess I’m rare️“.

Above all, I’m most thankful for my relationship with Jesus Christ. “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God” (Eph 2:8).

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