Robin
“My whole life I was told I had a mental health disorder and my problems were all in my head. When I found out that it was Narcolepsy and Cataplexy and it could be fixed, it changed my life. I had five good years like that. Then, COVID-19 happened and my whole world changed again.”
HONEY BROOK, PENNSYLVANIA: I lived with Narcolepsy and Cataplexy for 27 years not knowing it. When doctors finally figured it out in 2005, it all fit. My whole life I was told I had a mental health disorder and my problems were all in my head. I’ve been told I had a borderline personality disorder, bipolar disorder, depression, manic depression. They threw every pill you can imagine at me. When I found out that it was Narcolepsy and Cataplexy and it could be fixed, it changed my life. Within two years I was able to go back to being fully a functional person again.
I lived with Narcolepsy and Cataplexy for 27 years not knowing it. When doctors finally figured it out in 2005, it all fit.
Then, in 2009, I was diagnosed with fibromyalgia and gastroparesis (a paralyzed stomach). I don't process any solid foods. I had to have open stomach surgery to live. I have a crushed C-Spine with nerve impingement and narrowing of spinal fluid. So, I have problems with my upper body, my neck, and a migraine condition from nerve damage. Each one of those diagnoses is a fight. I live with chronic pain and fatigue 24/7.
Initially, I poorly managed my health and was completely bedridden from 2009 to 2015. Then, I got this determination I was going to live, that these disabilities were not going to own me. I had already missed my children’s high school and college graduations because I was stuck in bed and I wasn't gonna let life keep passing me by.
I got this determination I was going to live, that these disabilities were not going to own me.
In 2015, with advice from a friend, I changed my diet radically. I really felt like there was nothing more I could lose. So, I switched to an autoimmune protocol diet. I don't eat sugar, dairy, or grains anymore. Slowly but surely, I got out of bed and refused to get back in. I went from asking God each night when I went to bed to end my constant pain to finally managing my pain and changing the quality of my life for the better. I could go to the grocery store. I could take the dog for a walk. I could do the laundry. I could do some cleaning. I could do small things one day at a time. I was in a good place. I had five good years like that. Then, COVID-19 happened and my whole world changed again.
Then, COVID-19 happened and my whole world changed again.
At the beginning of 2020, my husband was traveling all over the country to conventions with 7,000 to 10,000 people going in and out daily. He ended his trip the first week in March after having dinner with a colleague from New York City who happened to be sick at the time. When my husband came home, he got sick. Then, I got sick.
When my husband came home, he got sick. Then, I got sick.
It started with a sore throat and signs of my usual annual sinus infection on March 12th. After two weeks, I got this very dry cough under my sternum. I could feel the pain all the way down under my rib cage. I knew this cough wasn't me, I’ve never been someone who coughed when I was sick. At the end of March, I called my family doctor. He said, “You're at risk. Let's just get you tested.” That's when things got worse. I started having gastrointestinal problems. The cough got worse with heavy pressure on my chest, pain in my chest, a rapid heartbeat, palpitations, and tachycardia.
We were all shocked when my test came back positive ten days later on April 7th. By the time they sent my husband for a test seven days after mine, he was already negative. My husband asked his colleague if he ever got tested, but he said they didn’t have enough tests in NYC so he didn’t know for sure but he suspected he had COVID-19.
Since I hadn't left my house since February 21st, we know my husband was the only person who could have brought it home. So we know my husband was the source, but he recovered and tested negative while I was still positive. Needless to say, his recovery was much faster and shorter than mine. At the time, I thought I would get over this virus and be back to my normal self quickly. But, that didn't happen.
I thought I would get over this virus and be back to my normal self quickly. But, that didn't happen.
Nobody has been testing for antibodies here. I have not been offered one. So, I don't even know at what point I was negative. I only know I was negative in August when I was retested because my symptoms had come back, again. After COVID, I feel like I'm back to those scary days when I became disabled only now I have more issues to deal with.
After COVID, I feel like I'm back to those scary days when I became disabled only now I have more issues to deal with.
I think my biggest worry or concern is a new permanent health situation that I will have to learn to live with a new disability or a new adjustment to one of my disabilities. I had to learn to live with Narcolepsy, Cataplexy, and REM sleep disorder. I had to learn to live with fibromyalgia. I had to learn to live with gastroparesis. I had to learn to live with the neurological side effects of a compressed C-Spine. I live with chronic illness and pain already. Some days I can’t walk, or I have a limp. Some days I can't hold a cup or blow dry my hair. Having to start that process all over again is the worst nightmare I can imagine because it took me 20 years to get that right.
Having to start that process all over again is the worst nightmare I can imagine because it took me 20 years to get that right.
Most concerning to me aside from the ongoing Long Haul COVID-19 flares are my vision, the headaches, and heart issues. I can't read much anymore. My vision is completely blurred with or without glasses, when I try the headaches are so bad. I used to read a book a day. Now, I don't read at all. All my tests and blood work have come back normal aside from tachycardia. Not one of my doctors can explain any of it. They all deny the concept of post-COVID issues.
The headaches are so different from migraine, sinus, or tension headaches. In sinus headaches, I can feel where the pain is. If it's a migraine headache, I can feel it in my neck, shoulders, and head. But, this pain is like an ax. It comes down from the top of your head and it is sharp pain and pressure. And it goes right through my eyes.
Until three months ago, I thought something else was wrong with me. I was still coughing. I never coughed before. I’m used to fatigue and pain, but I could work out before. Now my stamina is completely gone. I used to ride my spin bike 12-17 miles a day, and now I can't even do three miles on my bike once a week. I lost the ability to use the only strong part of my body left, my legs, and it’s absolutely heartbreaking. I knew something was definitely not right. I started to wonder more about Covid-19. Could I still have it? Could I get it again? So, I started looking at articles and reading CDC information. I went to Facebook to look for support groups. That is how I found out there are other people like me out there. I'm not the only one.
In the beginning, my symptoms were not typical. I had a severe sore throat, headaches, sinusitis issues, and a cough. I didn’t have a fever. I didn’t lose my sense of taste or smell. I thought I was lucky and had a fairly mild case until months later.
I monitor my heart rate, blood oxygen level, and blood pressure every day so I can see the ebbs and flows. Everything's a little bit “off”, but it's still what most people call normal. So, I'm lucky. I think I have one of the more mild cases of post- COVID syndrome.
After two months with symptoms, I messaged my family doctor. I said I had some concerns regarding my COVID-19 positive test and my recovery. He told me, “It's not COVID-19. It's too many weeks from COVID-19. There's something else going on. You need to come in and we need to send you for testing.” It’s now seven months later and he still doesn’t believe me.
It’s now seven months later and he still doesn’t believe me.
I decided If my family doctor's not going to move me forward, I will go to my specialists and work my way back because I am determined. I'm like, “Let me find a doctor who will believe me first because I truly believe this is all post COVID-19. I do.” I do not want anybody else to suffer like this. If I can educate my family doctor by doing it this way, then I will do it. It's my job to educate him since he's not educated on post-COVID-19 issues. Most people told me to find a new doctor. My family doctor has been with me through every step of my disabilities. I won't give up on him because he didn't give up on me. I will take this as an opportunity to educate him. I just need another doctor in my corner. Unfortunately, this hasn’t happened yet. But, I refuse to give up.
My family doctor has been with me through every step of my disabilities. I won't give up on him because he didn't give up on me.
In my heart I know we just need to get more doctors on board -- more doctors educated, and aware of post-COVID-19 illness. When that happens, there'll be a lot more help for a lot more people. The more recognition the studies get, the more we learn. Everybody’s going to have a new learning curve.
I tried to figure out what was different about me with COVID-19 versus all of my disabilities. I have yet to figure out what parts of this may be permanent and what can be done to minimize the damage.
I don't want to go back to where I was. I won’t go back there. Some days I want to give up, but I can’t. It's not who I am. I might take a nap for a couple of hours, then I'm going to get up and keep going, keep trying. I may have post-COVID-19 syndrome, but it will Never Have Me.
I may have post-COVID-19 syndrome, but it will Never Have Me.
SYMPTOMS: Dry Cough, Sore throat, Headache, Body aches, Blurred vision, Lack of sleep, Shortness of breath, Chest pain, fatigue, tachycardia, palpitations, muscle weakness, dizziness, brain fog, lethargy, hormonal symptoms of menopause (after 6 years testing post-menopausal)