Editor’s Note: We are committed to telling the authentic stories of the MS movement and being a source of reliable information for people affected by MS. However, every experience is different, and this blog is not intended as medical advice. Please contact your healthcare provider if you are experiencing COVID-19 symptoms.
As I sit alone in my house, I am becoming familiar with the sounds it makes I never noticed before. The ticking of the clock is soothing, the dropping of ice in the freezer startles me and the subtle noise of the furnace turning on calms me. I am not usually alone with only the noise of my home. You see, my home is usually full of life. I normally cannot hear the sounds of my home over the sounds of my two boys and their friends. I must admit that I miss the sounds of the water running forever in a way too long shower, the microwave heating up a second and third dinner, and the monotonous commotion of endless video games.
I reflect on many things during my time in quarantine. Why did I get MS? Why do I have to get treatment once a month? Why am I always tired? Why does my hand go numb? Why can I not walk a mile without foot drop?
Sitting here in the quiet with my own thoughts, I have come to realize that MS plays a complicated role in my life – and with it comes the good and the bad.
You see, my MS medication may put me at a "higher risk" which enabled me to be tested for COVID-19 as soon as I displayed symptoms. There, I said it… COVID-19, a very real and very scary respiratory infection that is attacking the world and is terrifying those of us who are immunosuppressed.
It should now be making sense as to why I am sitting alone in my home. I tested positive for COVID-19. Yes positive. As if having MS isn’t enough, now I have to deal with this too? On top of that, my doctor at the Cleveland Clinic said I was the first person with MS at the Cleveland Clinic to test positive. To date, I am still the only patient she knows of.
Great! Of all the times in my life, this is the time for me to be a trailblazer?
I want to take a journey back a few days. It was Friday, March 20, 2020. I was ready to go to the Cleveland Clinic for my monthly Tysabri treatment. Treatment 116 to be exact. That’s 9.7 years of monthly 3-hour round trip drives to the clinic. My chauffer on these monthly trips is my mother. These monthly trips have become “special” because I cherish the time with her, and I still rely on her for comfort and support.
Well, on this particular Friday, I received a call from the Cleveland Clinic Infusion room telling me that my mother, my rock and support system, was not permitted to enter the facility. This meant that she would have to sit in the car for two hours and wait for me. It also meant that I would have to “put on my big girl pants” and receive my medication alone.
After being asked many questions from the infusion nurse, it was decided that I was in good health and could keep my infusion appointment. I must admit, for the first time I was afraid to receive the drug. I was afraid because of the fear around COVID-19. Was I making the right decision – worried that I might be lowering my immune system at this time? For me, the answer was yes; this medication enables me to live a “normal” life with my illness.
I arrived for my appointment where I was greeted by a nurse dressed in full hazmat gear. I entered the infusion room and it looked different. For the first time, curtain dividers were separating patients. One of my usual nurses took my temperature and blood pressure. She then started my IV. After two hours, I was on my way home.
At 3:30 a.m. on Saturday, I woke up with a splitting headache and fever. I took some medicine and went back to bed. Later that day, still not feeling well, I decided I should reach out to the Cleveland Clinic. By this time, I had a slight cough and terrible throat and ear pain. The doctor turned my case over to the COVID-19 team, who decided to have me tested.
On Sunday morning, I had an appointment for the drive-up testing. I made the 3-hour trip to the Cleveland Clinic alone. I was terrified. I do not like having tests done, and I was scared about the results. When I arrived, I was greeted by a police officer directing me to a line of cars. Fighting back the tears, I entered the garage to see tents, portable heaters and dozens of medical professionals in Hazmat gear. When it was my turn, I could only see the eyes of the nurse who approached my car due to the protective gowns, masks and gloves. I will never forget the eyes of the nurse who approached my car. She was very calming and for that, I am forever grateful. When the test was over (yes it was uncomfortable to say the least), I began my drive home. This was a very long drive and my mind was full of uncertainties.
Not even 24 hours after testing, I received a call from my nurse practitioner. She said the words I feared the most. She told me that I tested positive for COVID-19. I’m not sure what she said after that because I immediately broke into tears. Fearing the worst. My children flashed before me: what will I tell them? How will I tell them? Am I going to die? Who was I in contact with? When I regained my composure, I was able to hear her words. She said, “You are healthy. You are a fighter. We are here for you. You are the first.”
Later in the day, I spoke to my local health department and was told that if I experienced breathing difficulty to call 911. I was also told that I could not be in contact with anyone until my symptoms improve and am fever-free for three days. And so, my quarantine and obsession with taking my temperature began. The solitude is deafening. The noises of silence are loud. The longing for human interaction and the longing to embrace my family is very real. Thankfully, my dad has been delivering daily meals and although seeing him through the glass is emotionally hard, his daily visits keep me connected in a way that FaceTime does not.
As I write this, a little over a week after receiving devastating news, I am happy to report that I am doing well! Today, I am fever free for the first time and my symptoms have improved. The daily calls from the Cleveland Clinic are reassuring!
My family should be able to come home in a few more days if my temperature stays normal. I am looking forward to a home full of life and noise again. This has taught me to slow down and embrace the noises of life. Do not let the barrage of negative news overwhelm you. Do not assume a positive result means death. Do not give up. I am a fighter because my MS has made me one!
Editor’s Note: For the latest information and resources related to COVID-19, please visit the Society’s Coronavirus Resources Page.