Do other long haulers suffer with brain changes? Seen any improvement?

Luckily through my job, i had short, then long term disability. They did have me apply for Social Security disability, but I was denied. They say everyone gets denied the first time. I have an attorney helping me appeal it. Also, when I was attending the Pain Rehab clinic at Mayo, the long term disability company called out of the blue and said they determined I’m not disabled anymore and quit paying me that day. My family did research on the company, Unum, and they are notorious for declining people with valid claims. There is a class action law suit against them, so now I have a different attorney helping me there. They make you feel like a deadbeat trying to work the system, when I would love nothing more than to feel better and be able to go back to work. This certainly is not a life anyone would pick.

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I have a lot of cognitive issues. I had a 4 hr. evaluation with a Neuro-Physch Dr which pin pointed where my issues are--delayed word finding, memory, recall, sequencing. I am working with a speech therapist which really helps. I keep a notebook log...on one page I write down what I am doing, hour by hour, and on the facing page what kind of symptoms/issues I have through the day like memory, spelling, sleep problems, extreme lethargy, terrible headaches, getting lost while driving a familiar route, hot & cold flashes. staying on task, word finding, body/head pain, dizziness, balance, shortness of breath at rest and/or with exertion, fast heart rate & what that rate is, emotional swings-anger, fear, depression, isolation, feeling overwhelmed. I limit my thinking work (planning my day, balancing check book, making appointments) to 2 hours a day and my physical work (doing housework, walking, garden, cooking) to 2 hours a day. This has been a tremendous step in warding off days of incapacitating exhaustion where I 'crash' and am basically MIA in my own life. I too became ill in November. I am (was) a frontline working-ER Nurse and got sick at work. I lost my job and work comp withdrew their coverage.

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Hello, l am new to this site. Fair warning this is a long post. I’m scared, frustrated, anxiety ridden & trying to hang on. I tested positive Nov 6th, 2020. I had done everything possible to avoid this disease. My husband is a 23 yr transplant survivor & didn’t want him to get sick. I worked in the title business, we saw people coming in to sell/buy property, a lot of people, it was an office of 15 people. I asked to work from home & was discouraged from that. “Too much of a risk for the company”. Out of the 15 of us all but 3 got covid. They still did not shut down the office, just adjusted the way they did business. I was sick, coughing, high fever, body pains worse than I had ever felt, headache, no smell, no taste or appetite. So weak I couldn’t do anything by myself, my husband always right by my side. Nov 12th was my worst day, 106 fever, blood oxygen 72. Called the hospital & “unless she is blue, we have no room.” So my husband watched & wanted me to go, I was not going to die on a gurney in the hall by myself!! I went to sleep & by morning the “me” that went to bed was not the “me” that woke up. I had NO memory, didn’t know who my husband was, didn’t know where I was, did know my name. After a difficult conversation I started to remember my husband the house the dogs. But I didn’t have the memory to use a toothbrush, I didn’t know how to put on makeup. I couldn’t tie my shoes. I also could barely walk with out falling down. I couldn’t carry on a conversation, I couldn’t get the correct words out or I just couldn’t focus. Needless to say I was scared. I saw my Dr & she said “hopefully things will right themselves”, 3 weeks went by without any progress. My work wanted me to return, couldn’t work from home. I tried for 2 days to go, I had to use my GPS to get to work & back home. I had no idea where anything was. Realized I shouldn’t be driving & took a leave of absence. I was referred to neurologist & went through every scan & test possible. On paper all tests came back normal. Saw a neuropsychologist and took a 4 hour test for cognitive skills. Test scores were not great, I cried through most of the test feeling like I was failing. I had 6 months of physical therapy to learn how to walk again, still have problems & still fall. Had the opportunity to continue PT, but just couldn’t afford to. By this time I had well over $30K in medical bills. I was put on short term disability, still no improvement. Neurologist stated that “ since all tests show normal I suggest you see a psychiatrist & get on with your life & quit wasting time!” I was then put on long term disability, Mutual of Omaha asked for updates etc, I gave them everything they asked for & they agreed with Drs that at the time I was still unable to work. Through my disability plan Mutual of Omaha contacted an attorney on my behalf for SS disability, I’m still that process of piles of paperwork. My check usually came on the 6th of the month, it was Dec 10th with no check. I called my rep, out of the blue he states “we have decided to deny anymore benefits for you. There is not enough medical documentation to continue.” He also states that “oh my bad, I should have contacted you before Thanksgiving! But I was going on vacation & didn’t get it done!” My husband had to take over the phone call, I was hysterical. When he asked the rep what documentation will be acceptable-they couldn’t actually say what they needed! So I have been referred to another neurologist-for more tests? That I am unable to pay for? I could have been working on getting “the medical documentation” almost a month ago! My husband & I had to sell our house & all of our belongings! We are not homeless just living different lifestyle.
So does anyone know what medical documentation an insurance company will accept for the inability to do math, spell, no longer have memory to do anything. I can’t follow a recipe, I can’t figure the check book. I will start something get sidetracked & forget what I was doing. I leave the water running in the sink & walk outside if it’s a nice day. I am unable to handle any stress or difficult situations, I completely come unglued & go into panic mode. As time goes on & going into my 2nd year I feel more of me is deteriorating. The joint pain has increased & I now need a brace to walk. Anxiety & depression are constant. Fatigue is still a killer, I’ve tried doing short walks or small tasks outdoors, but I am so tired for the next 2 days.
I welcome any thoughts or suggestions, please no negative comments.
Covid-19 destroys lives in so many ways. We all need to hang onto HOPE.
Thanks for reading & letting me share my story. Peace & Blessings to all.

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I fully understand where you are, as I’m in the same boat. Your story could be mine except some symptoms are different. I too am still waiting on SS disability. I had my first denial, and have an attorney appealing. Luckily they work on contingency if they win your case. I would make sure the Mutual of Omaha referred attorney is still working your case since the denied you. I was at a 3 wk pain rehabilitation when my companies long term disability company Unum called me and said they didn’t think I was disabled anymore, though they have medical records showing otherwise. From research my family did, many companies are notorious for denying valid claims. Mine has class action law suits against them. They try to wear people down to go away. I would look for a disability attorney right away. I’m not sure how long you have to file an appeal, but mine was 6 months. They also work on contingency. I just hired one myself. Just do a internet search. It’s horrible just being sick with long Covid, and then trying to survive when disability companies don’t do what they are supposed to do. I hope this helps. ❤️

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Hello, l am new to this site. Fair warning this is a long post. I’m scared, frustrated, anxiety ridden & trying to hang on. I tested positive Nov 6th, 2020. I had done everything possible to avoid this disease. My husband is a 23 yr transplant survivor & didn’t want him to get sick. I worked in the title business, we saw people coming in to sell/buy property, a lot of people, it was an office of 15 people. I asked to work from home & was discouraged from that. “Too much of a risk for the company”. Out of the 15 of us all but 3 got covid. They still did not shut down the office, just adjusted the way they did business. I was sick, coughing, high fever, body pains worse than I had ever felt, headache, no smell, no taste or appetite. So weak I couldn’t do anything by myself, my husband always right by my side. Nov 12th was my worst day, 106 fever, blood oxygen 72. Called the hospital & “unless she is blue, we have no room.” So my husband watched & wanted me to go, I was not going to die on a gurney in the hall by myself!! I went to sleep & by morning the “me” that went to bed was not the “me” that woke up. I had NO memory, didn’t know who my husband was, didn’t know where I was, did know my name. After a difficult conversation I started to remember my husband the house the dogs. But I didn’t have the memory to use a toothbrush, I didn’t know how to put on makeup. I couldn’t tie my shoes. I also could barely walk with out falling down. I couldn’t carry on a conversation, I couldn’t get the correct words out or I just couldn’t focus. Needless to say I was scared. I saw my Dr & she said “hopefully things will right themselves”, 3 weeks went by without any progress. My work wanted me to return, couldn’t work from home. I tried for 2 days to go, I had to use my GPS to get to work & back home. I had no idea where anything was. Realized I shouldn’t be driving & took a leave of absence. I was referred to neurologist & went through every scan & test possible. On paper all tests came back normal. Saw a neuropsychologist and took a 4 hour test for cognitive skills. Test scores were not great, I cried through most of the test feeling like I was failing. I had 6 months of physical therapy to learn how to walk again, still have problems & still fall. Had the opportunity to continue PT, but just couldn’t afford to. By this time I had well over $30K in medical bills. I was put on short term disability, still no improvement. Neurologist stated that “ since all tests show normal I suggest you see a psychiatrist & get on with your life & quit wasting time!” I was then put on long term disability, Mutual of Omaha asked for updates etc, I gave them everything they asked for & they agreed with Drs that at the time I was still unable to work. Through my disability plan Mutual of Omaha contacted an attorney on my behalf for SS disability, I’m still that process of piles of paperwork. My check usually came on the 6th of the month, it was Dec 10th with no check. I called my rep, out of the blue he states “we have decided to deny anymore benefits for you. There is not enough medical documentation to continue.” He also states that “oh my bad, I should have contacted you before Thanksgiving! But I was going on vacation & didn’t get it done!” My husband had to take over the phone call, I was hysterical. When he asked the rep what documentation will be acceptable-they couldn’t actually say what they needed! So I have been referred to another neurologist-for more tests? That I am unable to pay for? I could have been working on getting “the medical documentation” almost a month ago! My husband & I had to sell our house & all of our belongings! We are not homeless just living different lifestyle.
So does anyone know what medical documentation an insurance company will accept for the inability to do math, spell, no longer have memory to do anything. I can’t follow a recipe, I can’t figure the check book. I will start something get sidetracked & forget what I was doing. I leave the water running in the sink & walk outside if it’s a nice day. I am unable to handle any stress or difficult situations, I completely come unglued & go into panic mode. As time goes on & going into my 2nd year I feel more of me is deteriorating. The joint pain has increased & I now need a brace to walk. Anxiety & depression are constant. Fatigue is still a killer, I’ve tried doing short walks or small tasks outdoors, but I am so tired for the next 2 days.
I welcome any thoughts or suggestions, please no negative comments.
Covid-19 destroys lives in so many ways. We all need to hang onto HOPE.
Thanks for reading & letting me share my story. Peace & Blessings to all.

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I believe there is litigation on the workers comp issue, especially for front-line medical workers who became ill before vaccines were available.
My daughter found herself in the same situation, but the fatigue has mostly lifted, and her words come more easily now, after 20 months. Her employer accommodated her with a 4 hour per day telehealth postiton, but even that was a big stretch some days. She has progressed and will be resuming OR duties, where the pace is more manageable the urban ER.
Sue

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