Updated: Jun 20, 2019
How It Started
In 2016, I found myself dealing with some weird nerve symptoms that would not let up. I tried to explain it to my loved ones, but I couldn’t find the words. It was so odd to me since I am always on the go and staying busy. Even though I was dealing with this, I kept pushing myself for life and for work. However, the morning episodes increased. I would wake up feeling “paralyzed” when I would try to get out of bed. I would think to myself “this isn’t right” but would still attempt to get up.
After a couple of minor falls, more fatigue even after long hours of sleeping, and late arrivals to work, I began to realize something more serious was taking place. I remember telling my mother and my supervisor “I can’t get up out of my bed in the morning” and “I can’t get enough sleep anymore.” Both gave me puzzled looks and asked me to explain more, but it was still so difficult to do so. I then decided to consult my primary care physician. Fortunately, I had a close relationship with her, so I felt comfortable to explain everything I was experiencing, from headaches to bladder issues. During this conversation, I felt more encouraged to seek additional help. She assured me things would be okay, and placed a referral for me to see a neurologist.
Meeting With A Neurologist
By the time of my appointment was scheduled and I was seen, I was having more intense hand tremors, occasionally blurred visions and floaters, severe fatigue and was tripping over my own feet. I found it very hard to complete fine motor tasks at work, so my confidence at my great IV placements, ability to use my hands while educating patients and families, and my confidence in my normally excellent cursive handwriting dwindled. After my visit, I started intensive physical therapy for the muscle aches and numbness and tingling in my hands and legs. I felt like I had zero energy. This phase was abnormally draining and mentally straining because I still had to be the best mother and neuro nurse through it all. But then the blackout happened…
My Young Son Was Guided By Angels
On an off day, I had driven to my hospital parking lot for an event at my alma mater but somehow forgot the event was taking place. Sadly, I never made it there. People were looking for me but had no communication with me. I had lost my phone, intermittently loss consciousness, and was clueless about where I was. My then two-year-old son, who I am convinced was guided by angels that night, was with me the whole time. I didn’t regain consciousness until hours later. I called my sister and my sorority sisters when I remembered that there was a spare phone in my car console. I told them where I was, but couldn’t recall how I had gotten from the parking lot, back to my apartment and then back to downtown. To this day, it amazes me how things happened.
My medical team was notified. An EEG was done routinely by the neurologist, which showed some abnormal brain activity, specifically in my sleep. Over a couple of weeks, I continued having episodes, so a sleep study was done. It was then confirmed I was suffering from idiopathic epilepsy. I was devastated from not being able to work or drive and from experiencing bad side effects from medications. I kept smiling but that is not how I felt inside. As a neuroscience nurse, I was baffled because I was pretty healthy and active. As a new patient, I was depressed and afraid to be alone. I kept talking about getting a medical ID bracelet, but I was too embarrassed by the thought of it. Plus I wanted a stylish one if I had to wear one. Even when I returned to work from medical leave, I educated others on getting them, but never got one myself.
Then The Symptoms Returned...
Fast forward to 2018, after med stabilization and an incline in health, I began suffering from similar symptoms again. The triggers were attributed to grieving the loss of my grandmother from Alzheimer’s disease in February and my eldest aunt in June, high stress, insomnia, a traumatic patient assault and subsequent pain from injury, but I still didn’t understand why this time around. I never stopped being strong. I continued to smile and I pushed through once again while being compliant with my treatment plan orders. But then I had a seizure at work…
Here I was again! Back to square one of finding the source of the episodes. What everyone concluded originally was my seizures again. But after several procedures and follow up appointments, I actually have been diagnosed with experiencing convulsive syncope. When my body has the episodes which are awfully painful and uncontrollable with heart racing and extreme nerve discomfort & symptoms, syncope occurs, leaving me forgetful, altered, achy, and unsure of what happened around me. The most alarming incident occurred at the end of 2018, when “I had an episode in a grocery store and became completely unaware of what was going on. Had no clue where I was and what happened to my debit card. A helpful woman got my attention and asked did I have seizures. I replied “yes”, wondering how she knew. She then told me she saw my purple wristband… thank God I had one on…”
I am so thankful for God and thankful for the angels surrounding me. I am very cautious and careful, but That incident made my loved ones even more concerned for my safety and well-being and urged me to get more medical alert jewelry. Everyone wanted me to feel more independent & safe when I am out and about for errands and appointments. I gave in so I could get back to being me. I researched and looked for the best, and my Sorority sister purchased my first bracelet.
The Medical ID That Gives Me Peace Of Mind
It’s still been smiles and happiness even on my toughest days. I haven’t taken my Hive ID band off since December. It’s waterproof so I leave it on for showers. It comes in my favorite color purple so it stands out on my wrist. I love that it just takes a QR scan to have access to all of my pertinent health information in case of an emergency. My family members love it because they can be contacted immediately with their contact info if something happens. My son knows mommy needs to wear it and to tell someone if I need assistance.
MyID gives me the much-needed sense o