Choose Your Language:
Posted by: The Sumaira Foundation in NMO, ON, Patient, Voices of NMO
Before work, I would wake up at 4:30 am most mornings and meet my running buddies for a six mile run. On Saturday’s, we would do our long runs which were 13-21 miles. To train for marathons, one has to be dedicated and consistent with marathon training . For each marathon/half marathon, I set goals to reach my personal record. My goal when I started running in 2006 was to qualify for the B.A.A’s Boston Marathon. To qualify for Boston, one has to run by a certain time set by the Boston Athletic Association.
I had a few coaches that would tell me that I needed to increase my pace in order to qualify. To do that, I would do weekly track workouts that consisted of fast vigorous running 800’s around track followed by a lap of slow running and repeat the 800’s. My race times on many half and full marathons were great. I was able to reach my goals in running.
In 2012, I ran the Philadelphia Marathon in 3 hours and 57 seconds! For my age group, I had to run the marathon in 4:00:00 (4 hours). I was so excited! I finally qualified to run the 2014 Boston Marathon! My goal was achieved in running. Running marathons is quite a feat which takes dedication and consistency and I did it!
On April 21, 2014, I ran the 118th Boston Marathon which is the world’s most renowned marathon in history. In 2014, the Boston marathon was an inspirational marathon because it was just one year after the 2013 bombing of Boston marathon. Every runner ran as ONE; we were #BostonStrong. That day, I just enjoyed running with every runner and was in awe of all the spectators. The places we ran by were so historical. My finish time on that hot day was 4:09:11.
I continued running, ran two half marathons, and was also training for the 2015 Boston Marathon. However in April 2015, I began having low back pain with sciatica pain down my left leg. I saw two orthopedic doctors and had x-rays and an MRI of my low back. The results were lumbar radiculopathy. This slowed my running down tremendously. As I continued to run slow, I noticed a vibration feeling in my left leg with dragging the left leg. The orthopedic doctor said it was restless leg syndrome. I went to physical therapy and massage therapy.
On August 22, 2016, I was running slow around a track and my left eye went blind suddenly. I was in panic and fear. My husband, Steve, took me to the emergency room where they did an MRI of the brain. The results came back normal. I went to a neuro-ophthalmologist where additional testing revealed optic neuritis. I received three days of steroids intravenously (IVSM) at an outpatient clinic a week later because the eye doctor said I did not have multiple sclerosis. Little did we know this was NMO! After being treated with IVSM and prednisone , my vision returned to 20/200.
Two months later on Oct 28, 2016, I experienced a sudden severe muscle weakness on my left arm and left leg. I could not walk. My husband and I thought I had a stroke. Steve rushed me to the emergency room at Northside Hospital in Atlanta. MRI scans of the brain, cervical, and thoracic spine revealed that I had neuromyelitis optica. I had never heard of NMO or Devic’s Disease in my many years as a nurse. I was hospitalized for five days and treated once again with IVSM then followed up with heavy doses of prednisone. After five days at Northside Hospital along with a lumbar puncture and so many blood tests, I went to an inpatient rehab at North Fulton hospital where I would learn to walk again. I had to reteach myself to walk again as my lesions were C4-T6. After a week of inpatient therapy, I went to outpatient rehab. I finally was able to walk on my own after three months of physical therapy.
On September 11, 2017, Steve died unexpectedly while driving my car to pick me up early at work during Hurricane Irma. Steve wanted to take me to work as I was walking with a limp and he did not want me to fall. He never showed back up to pick me up at 10:30 am after I had spoken with him at 9:30 am. This was a nightmare for my two grown children, Brooke who was 28 weeks pregnant at the time with twins and had a one year-old son. My son, Patrick, was in school at the time and had to travel from Birmingham, Alabama to get to me at the hospital where he was taken by ambulance. Well due to stress, I had another NMO attack in December 2017 of optic neuritis in the right eye. The Eye Foundation at the University of Alabama treated me with IVSM for three days followed by high doses of prednisone. Vision returned to normal.
On August 29, 2018, I had back pain and the next morning, I had difficulty moving my legs to walk. My son took me to the emergency room. I was given IVSM for five days again followed by prednisone and had physical therapy. My walking returned to where I had a limp but walking without an aide. My lesions were new T2-T6 and T11. On October 16, 2018, I had another attack where I could not move my legs. Again – I went back to the emergency room, had 5 days of IVSM, taken off of CellCept and was waiting to get on Rituxan. This time, my walking was tremendously affected which resulted in walking with walker as my hip flexor muscles and lower legs were weak. Between Cellcept and waiting for Rituxan, I was back on prednisone.
By the end of October, I received my first dose of IV Rituxan. However, in between the first and second dose, I had a severe attack of optic neuritis in the right eye (my good eye). I went to see my neuro-ophthalmologist at the Eye Foundation. I could only count fingers. Low vision. I was in tears. Here I was, walking with a walker and now going blind in my only good eye. The doctor sent me home on prednisone. We could not do plasma exchange due to my low blood pressure and history of dysautonomia. All I did was pray to God and was annoined with healing oil twice and prayed over by my priest and a lay person. I prayed and asked God to please give me my vision back as a Christmas gift so I can see my children and three baby grandsons. Well God blessed me with a miracle…my vision returned by Christmas and I saw the neuro-ophthalmologist who confirmed my vision was 20/25 and it still is today.
At present I am still working on my walking. Some days, I walk with a walker and other days with a cane. I will continue to work on my walking and not give up.