I am finally giving up COVID can have me

Posted by billie6977 @billie6977, Jan 23, 2023

After now being 7 plus months of being tortured, over looked, and passed up. I am here to tell you all I am done trying. The pain of rejection hurts more than the pain left behind from Covid. All I wanted when I tried to make contact with the Mayo Clinic was for a doctor with a little knowledge of what is happening with me to just speak with me, but nope. I was sent a email stating there's no resources for me they were sorry to inform me my application was closed. That is it besides you can't contact this email. No reply!!!
I reached out to everyone and everywhere I could and nobody and I mean nobody responded. Except for the normal I will pray for you, called me a drug addict ( I don't take meds even so how is that), lie to me and lastly there is not one red care in this world for me. So I am here to say Thanks for nothing folks. I am done if I die nobody is going to care. I bet not one person has even read this message.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@bunzman

I understand the problem with being remote. What does your primary doctor say? Did they send recommend Mayo? Can you move? I can tell you that from what I hear is that some docs outside of the long covid clinics provide better care and guidance. It often involves listening and being willing to refer to the right specialist. You seem to have anger and frustration beyond Mayo as you cite the lack of response from people to understand and/or care. I get it, you are mad, but you seem very upset and spoke of letting (long) covid kill you. But if you are not sure what exactly is wrong, how do you know that? You said the pain of rejection hurts worse than the covid so it could leave Colleen and others to be concerned how you might react emotionally to that pain. I am not being insensitive when I mention moving, but if that is possible given your means for living, maybe you have a place closer to help where you might also have some support? Chronic illness and people struggling to find help has been around a long time; long covid has elevated the number. So yes, some people be empathetic, some sympathetic, and many may not have all the answers. But hopefully you get something from it and will encourage you to keep going.

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Please take a look at the rest of my stories just look even at my profile and see the history that I'm talking about I've had covid three times since February 2020 I recently just had a flare up since the beginning of December and I haven't gotten any better that's how I know.

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@billie6977

I do have a lot of frustration I have been in and out of doctor's offices but every time I go they're only wanting to do with the fact I have digestive problems I've now been diagnosed with gastroparesis I have lost close to 60 pounds yes I can't get up and move around a little bit and yes I I may have some anger issues that I'm dealing with but with that being said it's because the ball doesn't roll fast enough after 2 months I've tried to get answers at a definite diagnosis so I can apply for disability or get better whatever it is I just wish I do I finally have a appointment as of last night 3:30 of the morning after I wrote this post with a doctor one week from today. I reached out to the Mayo Clinic for one fact and one fact only because the person who deals with things that are out of their control that I personally don't want to put on here or anywhere else I thought the safest it really felt that this was their answer for me but I guess I was wrong but please don't be be up because I hurt so bad in my heart. And I mean no disrespect or ugliness to anyone I'm not angry but please walk in somebody's shoes mentally and try to understand where they're coming from . Empathy goes a long way God bless you all and I apologize that I vented on here I thought this is more of a support group then anything thanks for listening

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Billie, Venting allowed. 🙂

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@colleenyoung

@billie6977, I'm sorry that you are suffering so much. I also understand how hard it is not to be able to get an appointment with Mayo Clinic. Unfortunately, with so many people dealing with post-COVID syndrome there is a much greater demand for appointments than spots available.

Have you looked into COVID specialists listed on the SurvivorCorps website? Here's a like of Post Covid Care Centers.
https://www.survivorcorps.com/pccc

If you are feeling in despair and just want to talk to some, please call or text 988, the 988 Suicide & Crisis Lifeline https://988lifeline.org to speak to a trained counsellor.

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Colleen I apologize if I came off like I was having issues or if a misunderstanding of what frame of mind I was in please forgive me as you know this can really make a person stir crazy pretty good I really do appreciate your feedback your comments your support it really does mean a lot

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@sunny8

Tell us your symptoms. Maybe we can help you. We all have different
symptoms. We can be there for you.

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Ok I am going to try the best I can here.
1) 3 x COVID positive since
(2/20)
2) sinus / respiratory runny nose swelling in nasal area with shortness of breath
3) migraines bad Cluster Headaches
4) pulsating tinnitus accompanied with sharp burning pain through middle of skull the radiates into the spine and from the spine up to my ears bilateral.
5) vision problems
6) dizzy spells( similar to POTS)
7) tingling electric sensations done arms and legs. Muscle spams
8) major digestion issues and kidney issues. I have had tests ran waiting on biopsy results for cancer to return but Doctor already know that I have gastroparesis. I literally went a month and a half with no bowel movement or being able to keep food, medicine or some liquids down. I lost a total of 46 pounds in that time.
Very flu-like symptoms weak mind you I have been eating small meals of soup broth and smooth lite foods for the past 7 days so I do have gotten some movement back, but I was pretty much confined to bed for a month still have issues due to lack of energy
some coordination issues.
9) Easily agitated.
10) Depression and major anxiety.
I will not take any type of SSRI. I refuse to put that in my body.
Also pre-existing conditions
COPD, bronchitis, previous cancers, psoriasis, history of migraine, smoker, obesity, arthritis, severe Obstructive Sleep Apnea. And History of Sinusitis and Anxiety and Depression from Cancer.

I am really grateful for you to ask.
This morning I finally was able to set an appointment with a PCP that accepts my new insurance. She takes the Holistic Approach before any. I couldn't ask for a better mindset in a physician. I will see her in a week.

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@billie6977

Ok I am going to try the best I can here.
1) 3 x COVID positive since
(2/20)
2) sinus / respiratory runny nose swelling in nasal area with shortness of breath
3) migraines bad Cluster Headaches
4) pulsating tinnitus accompanied with sharp burning pain through middle of skull the radiates into the spine and from the spine up to my ears bilateral.
5) vision problems
6) dizzy spells( similar to POTS)
7) tingling electric sensations done arms and legs. Muscle spams
8) major digestion issues and kidney issues. I have had tests ran waiting on biopsy results for cancer to return but Doctor already know that I have gastroparesis. I literally went a month and a half with no bowel movement or being able to keep food, medicine or some liquids down. I lost a total of 46 pounds in that time.
Very flu-like symptoms weak mind you I have been eating small meals of soup broth and smooth lite foods for the past 7 days so I do have gotten some movement back, but I was pretty much confined to bed for a month still have issues due to lack of energy
some coordination issues.
9) Easily agitated.
10) Depression and major anxiety.
I will not take any type of SSRI. I refuse to put that in my body.
Also pre-existing conditions
COPD, bronchitis, previous cancers, psoriasis, history of migraine, smoker, obesity, arthritis, severe Obstructive Sleep Apnea. And History of Sinusitis and Anxiety and Depression from Cancer.

I am really grateful for you to ask.
This morning I finally was able to set an appointment with a PCP that accepts my new insurance. She takes the Holistic Approach before any. I couldn't ask for a better mindset in a physician. I will see her in a week.

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Hey Billie, please note that I removed your personal email address. I did this since Mayo Clinic Connect is a public forum. If you wish to connect with a specific member, you can do so by the secure private message function.

At the same time, I also like to underline how sharing in the forum everyone benefits and you hear from many. 🙂

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@colleenyoung

Hey Billie, please note that I removed your personal email address. I did this since Mayo Clinic Connect is a public forum. If you wish to connect with a specific member, you can do so by the secure private message function.

At the same time, I also like to underline how sharing in the forum everyone benefits and you hear from many. 🙂

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Yes ma'am I apologize for the email address. I hope others will understand I have been trying to bring awareness to the problem everyone has. I know how difficult it is and if it helps others Glory?!!!

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@susanhi

I am interested in what you are experiencing after COVID. I have post-Covid since 12/20 and I can't find any help or relief. By 3/21, I had 7 thoracic disks collapse and extreme rib and shoulder pain. I hate taking meds when they just barely help. Could you share your experiences.

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I have copied and pasted these from another conversation I must say I hope it helps you understand a little more and at the same time I wanted to say I am sorry all that you are going through. This is a very hard time for most suffering. I pray God would take it away from us all.
1) 3 x COVID positive since
(2/20)
2) sinus / respiratory runny nose swelling in nasal area with shortness of breath
3) migraines bad Cluster Headaches
4) pulsating tinnitus accompanied with sharp burning pain through middle of skull the radiates into the spine and from the spine up to my ears bilateral.
5) vision problems
6) dizzy spells( similar to POTS)
7) tingling electric sensations done arms and legs. Muscle spams
8) major digestion issues and kidney issues. I have had tests ran waiting on biopsy results for cancer to return but Doctor already know that I have gastroparesis. I literally went a month and a half with no bowel movement or being able to keep food, medicine or some liquids down. I lost a total of 46 pounds in that time.
Very flu-like symptoms weak mind you I have been eating small meals of soup broth and smooth lite foods for the past 7 days so I do have gotten some movement back, but I was pretty much confined to bed for a month still have issues due to lack of energy
some coordination issues.
9) Easily agitated.
10) Depression and major anxiety.
I will not take any type of SSRI. I refuse to put that in my body.
Also pre-existing conditions
COPD, bronchitis, previous cancers, psoriasis, history of migraine, smoker, obesity, arthritis, severe Obstructive Sleep Apnea. And History of Sinusitis and Anxiety and Depression from Cancer.

I am really grateful for you to ask.
This morning I finally was able to set an appointment with a PCP that accepts my new insurance. She takes the Holistic Approach before any. I couldn't ask for a better mindset in a physician. I will see her in a week.

REPLY
@doglover17

I completely understand what you are going through.
I have been suffering from long-covid gastrointestinal issues for well over a year. I've had x-rays, CT-scans, endoscopy, colonoscopy, blood drawn, gastric emptying study, and it all comes back normal. I made an appt at University of Nebraska Medical Center in Omaha 3 months ago. Tomorrow was the earliest they could get me in. Their office just called a little while ago to tell me that I can't see a PA for my 1st visit. I have to see a real doctor. They can't get me in til April. I am beyond discouraged. My qualify of life stinks. I'm sick to my stomach, all day, every day. Weight loss, no appetite, excessive burping. I am absolutely miserable but no one, apparently, is taking me seriously.
So, I know exactly how you feel. You are not alone in this fight.

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My heart and prayers go out to you and your frustration I can completely relate the best thing that my gastrologist had told me is start a gastroparesis diet. And try using liquid meals it helps. Also I'm not a fan of Gatorade or Powerade anything of that sort but I found that drinking one or two body armors a day seems to help with the fatigue and also sues the belly it does mine. As far as finding doctors or anything I'm just in hope that my new PCP will be a good one she is a holistic first approach kind of position and that's exactly what I believe in I have YouTube I have researched CDC there is another website now that is called long covid.org you may find some information out there as well and one thing that I have found today is if you go to your Google site and type in local charity that it brings up for your county God bless you and I wish you all the best

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@billie6977

I do have a lot of frustration I have been in and out of doctor's offices but every time I go they're only wanting to do with the fact I have digestive problems I've now been diagnosed with gastroparesis I have lost close to 60 pounds yes I can't get up and move around a little bit and yes I I may have some anger issues that I'm dealing with but with that being said it's because the ball doesn't roll fast enough after 2 months I've tried to get answers at a definite diagnosis so I can apply for disability or get better whatever it is I just wish I do I finally have a appointment as of last night 3:30 of the morning after I wrote this post with a doctor one week from today. I reached out to the Mayo Clinic for one fact and one fact only because the person who deals with things that are out of their control that I personally don't want to put on here or anywhere else I thought the safest it really felt that this was their answer for me but I guess I was wrong but please don't be be up because I hurt so bad in my heart. And I mean no disrespect or ugliness to anyone I'm not angry but please walk in somebody's shoes mentally and try to understand where they're coming from . Empathy goes a long way God bless you all and I apologize that I vented on here I thought this is more of a support group then anything thanks for listening

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My opinion and only well wishes to you. We all understand and can relate to some symptom or frustration or all of it you have endured. This is truly why the ER doctors say the most challenging time of peoples lives. Please dont give up no matter what. Have you tried a social worker thru your healthcare system? I know difficulties of income as Ive had none about a year. Have you contacted your local county office for different assistance programs such as SNAP, Liheap, marketplace insurance, for anything your state can offer or federal programs they can suggest for your particular circumstances? If the first person doesnt seem to be helpful, call back in couple of days for someone else who hopefully has been there longer or trained with more current info. I know the processes are almost impossible but I have found being very informative about your symptoms preventing ability to do paperwork or research with brain fog etc helps get further assistance. Most everyday people you talk to or even see have no clue what post covid is. They think its just covid you get over in a month☹️ Really try to take day by day for your health and sanity. Ive been doing this for about a year and in bed responding but tomorrow or even later today probably better. Found different expectations help with the mental part affecting healing our bodies. Keep simple reminder notes on calendar for one to two week follow up knowing if they say couple of days more realistic with overload on healthcare systems etc and if response in stated timeframe so appreciative! We are here for you and happy to share the positives of our healing journeys that can become yours!

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@law59

My opinion and only well wishes to you. We all understand and can relate to some symptom or frustration or all of it you have endured. This is truly why the ER doctors say the most challenging time of peoples lives. Please dont give up no matter what. Have you tried a social worker thru your healthcare system? I know difficulties of income as Ive had none about a year. Have you contacted your local county office for different assistance programs such as SNAP, Liheap, marketplace insurance, for anything your state can offer or federal programs they can suggest for your particular circumstances? If the first person doesnt seem to be helpful, call back in couple of days for someone else who hopefully has been there longer or trained with more current info. I know the processes are almost impossible but I have found being very informative about your symptoms preventing ability to do paperwork or research with brain fog etc helps get further assistance. Most everyday people you talk to or even see have no clue what post covid is. They think its just covid you get over in a month☹️ Really try to take day by day for your health and sanity. Ive been doing this for about a year and in bed responding but tomorrow or even later today probably better. Found different expectations help with the mental part affecting healing our bodies. Keep simple reminder notes on calendar for one to two week follow up knowing if they say couple of days more realistic with overload on healthcare systems etc and if response in stated timeframe so appreciative! We are here for you and happy to share the positives of our healing journeys that can become yours!

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Law59,once again I just want to thank you you always have a way of explaining things sometimes when I read some of your comments you're finesse and your demeanor always has a way of making me comfortable first of all. I have since I did this post been able to work some things out. I'll give an update on here to everyone here shortly but I have appointments set for tomorrow and next Wednesday I finally have found a primary who is holistic first and medicine second which I love. Plus some other things are in the works I'm going to leave none of the message like I said but I just wanted to let you know I have been trying to stay active and I usually am one of the most positive people I don't believe in harboring anger and I don't hold grudges I don't forget though. This has really been a trying toll on myself and as much as it's brought me down into depression and anxiety attacks and all that kind of sort of thing my heart goes off to those who are not always so positive. I know that they say that some of us are able to function and some of us not so well I'm going to choose to fight everyday thank you again God bless you I really do hope that you are doing well and like I have offered before you can always connect with me on the private conversation like that name at the top I'll be more than happy to visit and go over things but I'm going to put a message here or a post about how things are going I do have a good progress report.

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