Ellen - Macomb County #LongCovid
I tested positive for Covid-19 on January 27th, 2021 after a family member tested positive. I am a 38-year-old mother of 3 daughters and live in Macomb County. Previous to contracting Covid, I worked as a barber/stylist for 17 years and was in the best shape of my life, with no known pre-existing conditions.
The first week after testing positive was basic sniffles and tiredness so I just quarantined at home, thinking I would wait it out. On day 8 I woke up in the middle of the night to extreme stomach gripping and nausea. This went on for days along with sweats, chills, body tremors, and extreme weakness. At McLaren Macomb I was seen twice for extreme nausea and then for ulcer-like symptoms that ruled out gallbladder issues, diverticulitis, and pancreatitis. After three weeks and losing a lot of weight, my symptoms began to change... to neurological. By the fourth week, I had developed insomnia. This wasn’t insomnia that one would think like I had too much on my mind or was having anxiety. It was a literal sleep switch that wouldn’t shut off. I was up for 6 days straight without even a nap. Finally, I was given meds to help with my sleep but the nerve shocks, gripping, tasering, zapping, poking, etc kept on for weeks. I began to have what I now are adrenaline surges and tachycardia episodes 180 At times. It would start with chills and then I would feel like my body was plugged into an electrical outlet, shaking so hard my teeth would chatter and I would be sore for days after. I had horrific night terrors, myoclonic jerks, teeth pain, jaw pain, hair loss, tremors, weakness in my voice, shortness of breath even though I never had that or a fever in my acute stage, blotchy skin, and have been put on heart medication. Two months into the Long haul I began to have bladder bleeding and pain in my kidneys along with a concussion-like feeling. Every test I have had comes back normal. I feel that the chemistry in my brain has been altered and mood regulation has been affected.
Every doctor I have seen has been compassionate but admits they do not know enough about this virus to tell me anything except “wait”. I am not able to work as my job requires me to stand all day and I can barely stand to do basic household chores without it throwing me into another relapse.
The state of Michigan has been allowing me to collect unemployment but they are now requiring people to show that they are actively searching for work. I have not quit my job nor have I been fired. I miss my job terribly and still have no definitive tests to prove how sick I am.
I am involved in a long haul study through Incelldx— Dr. Bruce Patterson, an immunologist, and Dr. Ram Yogendra,
At Covidlonghaulers.com who have been trying to help long haulers since last year. They have been the most active in doing research to find the mechanism of why so many of us are still sick. Long haul clinics to me are just collecting data and telling us to come back in six months or trying to rehabilitate through PT.
The vaccine has not been shown to have enough evidence to prove it will help us, especially if the persistent virus is the problem. Many have had it caused worsening for symptoms. We are pretty much on our own.
Watching our country switch the narrative overnight from staying home and double masking to going out and attending a sporting event, is heartbreaking to me. There are many casualties from this virus and will be many more. It’s not all deaths or recovered. Some remain sick and I hope that help comes soon.
The Michigan Covid 19 ‘Survivor Stories Blog’ highlights fellow Michiganders to continue building connections and shedding light on long-haulers that need additional resources and support.