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chrisself (@chrisself)

Saliva Issue

Post-COVID Recovery & COVID-19 | Last Active: Nov 27, 2023 | Replies (14)

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YES! Yes. Embarrassing. Have to have a tissue when I talk. Not drooling so much as feeling like the corners of my mouth are always wet. Yes I have had long covid for 3 1/2 years. POTS etc. So many many odd things. Kidney stones. Most likely from dehydration. Things build more symptoms but the root is still covid. No appetite. Even Water sometimes makes my nauseous.

I went to my family's last Christmas and had to carry a tissue . I thought I was having a drug reaction. Or the muscles in my face we're just getting droopy from not wearing my partial while I've been sick. We sat in a group to open Christmas gifts and I sat on the couch. Nobody would sit next to me, or on the couch at all. It was hard. I'm not joining my family for christmas this year. Id rather be alone than think I gross people out. Or going to give them covid. I've had very little empathy from family or friends though I've been sick for so long. People would rather we just go away and ignore us. I think we as a group scare people who want to pretend long covid, or even covid, is a political hoax.

I feel like covid will eventually kill me and people will say "oh, I guess she WAS sick." How many of us years later will die of covid complications and never get counted in the grand total? I want to be counted. Getting covid stole what I had left in life. People need to know. My mother wasn't counted either. Feb 2020. 2 weeks too soon to be acknowledged. Viral infection that killed her after being in the hospital for a few days so she could get into rehab for her knee. Killed her. 2 weeks later they would have called it covid. Instead they called it pneumonia. How many others.

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Replies to "YES! Yes. Embarrassing. Have to have a tissue when I talk. Not drooling so much as..."

I am so sorry. Remember you are not alone. I am so happy I found this online support group and I hope it will be good for you as well. I have had doctors and coworkers not understand why I am so sick. My primary care physician did not believe that some of my issues were real due to all the negative test results. Family members at first were telling me to just push through this it was mind over matter. After years this has now stopped. Coworkers and family are much more understanding. I tend to avoid going anywhere if my symptoms are worse than usual. I am lucky have a job that I am able to do from home.
When people do not understand something that is going to be frightening to them and unfortunately they react in odd ways. I barely eat but gained an insane amount of weight. I have POTS, Neuropathy, CRPS the extreme form of Neuropathy in certain areas, gastroparesis, brain fog, etc. Now my teeth are falling out. I am being tested for Sjogren's Syndrome which they are finding that people who have POTS from Long COVID also are being diagnosed with Sjogren's syndrome. I feel like a fat disgusting blob and losing my teeth is not helping. Sjogren's causes your salivary glands to now work correctly. I have talked to family members and asked them to be patient as I have brain fog and getting upset or constantly correcting me is going to make me anxious which will make it worse. That has improved. They finally understand I am not going to get better, I am just going to be able to mitigate some of the symptoms.
This has been miserable and a difficult path, but I have finally accepted I am not going to be who I was before. I am not going to be slim anymore. Luckily you can replace your teeth at a very high price. I have found things that I can do while sitting as I can't tolerate more than 20 minutes of physical activity at a time. And some close friends of mine are now planning monthly get togethers. I care more about seeing them then how I look.
Try to find things you can do now that will make you happy. It makes a big difference. I also have cats, low maintenance pets, that make me happy and feel like I am not alone. I really hope you are able to find some good things that you can adapt into your life now. If you have anyone, a particular family member or friend who is understanding try to keep them close in your life. One person is better than none. Again I am so sorry you are dealing with all of this. I wish I had the magic answer to cure all of us.