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.

@billie6977

Hello, @joansmurphy Thank you for your kinda, informing, and very encouraging message. I wanted to apologize for my tantrum the other day. I was really just at the end of my rope. I had tried to remain positive, but it felt like the universe had something against me and didn't want me to move forward. I reached out to so many avenues and each one closed down due to one thing or another. Finally we took a evening off and just got away from it all and cleared out thoughts on. When we got back I was able to go over everything we had done already and looked at what we didn't follow up on or what we haven't fully read. There was a discharge packet that I never seen, because I was so sick and my eyes hurt so bad that by the time I had been able to process anything it was forgotten about. When I read this Wednesday or Thursday morning I came across the words (Discharged with Long Covid) Plus, this was positive results as well. There is still a lot of testing and a few procedures and surgeries I will have to go through, but with that diagnosis I can finally get some help. We were approved for SNAP benefits no questions asked. I am seeing a new Primary Care Doctor with Holistic Medicine this coming week and we will be getting the results back from the 4 biopsies this week and we will know what is next. Plus, that $2000 a month Medicine I needed is now only $30.00 for 90 days. That is for the first 5 months. I am not done yet. After being evaluated if need be the prescription will be almost free. Now I wish my health would start doing better. I am so grateful for your inspiration. We may have some struggling head, but we finally have a foundation that we can work with. Everyone on this site who thinks there is no hope just read some this discussions and you will see there is always hope.

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I’m so glad to hear this. It’s hard not to get frustrated when you feel so sick and you have to fight to get help. Please keep us informed on your progress. Some insurance companies offer a manager to help a patient keep things straight who is suffering from a complicated illness. That person would access your records and help the insured to keep things moving in the right direction. I don’t know exactly how it works but I don’t believe it’s hands on at all. I would think they would call doctors as needed. Just a thought. I hope you have a better week. 🙏🏻😘

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@joansmurphy

I’m so glad to hear this. It’s hard not to get frustrated when you feel so sick and you have to fight to get help. Please keep us informed on your progress. Some insurance companies offer a manager to help a patient keep things straight who is suffering from a complicated illness. That person would access your records and help the insured to keep things moving in the right direction. I don’t know exactly how it works but I don’t believe it’s hands on at all. I would think they would call doctors as needed. Just a thought. I hope you have a better week. 🙏🏻😘

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Thank you I hope you also have a blessed week. I have 2 people set up to get into my files and handle my affairs if something was to happen. It's a two man job one will have the password and the other has the username. i also let the doctor office know I have trouble with my memory so they will notify me before appointment and I have everything written up so I can refer back to what has happened. Keep in touch.

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I definitely will. The program I was referring to is for now not for when you can’t handle things any longer. Like yourself, it’s for complicated illnesses to be sure everything is being done that should be done. Have a good week. 😘

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I can understand your frustration. I’ve had long covid for over two years now. Is there anything in particular that you are seeking and not getting help for? I’ve had a lot of trial and error with treatments,doctors and meds some things were a success and some not but I’m definitely doing better than I was a few months ago so if I can be of any help please let me know.

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I’m so sorry you are going through this. I too faced so many barriers. There is hope but limited access to care. Dr Munappali is the longhaul Dr I saw at Mayo. Look her up and have someone refer you a primary care pulmonologist.

I do help coach people on how to get into a rhythm and train themselves to recover.

On social media the content is free and many are beginning to get results.

I am not paid I’m just sharing content and tools that work.

You not alone. You are not crazy.

I only ask you share with me how the information I give you helps. Don’t get stuck and don’t give up. The health care system was not prepared for this neither were we….

Don’t give up.

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Hi, @billie6977
You sure have been through a lot. For some people, like yourself, Covid is really a nightmare. I just got over a 20 day siege of Covid but have no lingering problems

I didn't read every post in this discussion so if I am repeating something someone else has said, please forgive me.

Mayo Clinic is certainly a wonderful resource, generally rated #1 in the country, but there are other excellent medical centers. I don't know where you are but I am within 55 miles of Boston so we use the facilities there, most frequently Mass General. If you look at the US News hospital ratings you will find a wealth of information.

https://health.usnews.com/health-care/best-hospitals/articles/best-hospitals-honor-roll-and-overview

I would go forward from there. Hopefully there are some top medical centers that are within a reasonable distance from you.
Good luck with this. I hope you find the help you need.
JK

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@billie6977

So this is inlude to a post that I placed about I've given up COVID can have me!!!!!
Well let's just say I don't give up so easy. Since that post a lot of things have changed in my life in such a very short time. By the grace of God I have been blessed with a new primary care physician, she is holistic approach medicine last kind of doctor is which some of you may know that is my heart and soul please I would rather change something in my life before taking a bunch of pills. PS, that might be a good reason why I was never able to get over covid because I don't like taking pills. But let's get back to the subject at hand not only has that happened but one of the churches reached out and has helped us cover our rent I no longer have to pay any rent until April which gives me some time to get some other things taken care of. Plus the HR director for the company that I work for that fired me contact me to let me know that it was illegal for what they done and that she is going to them for them to reverse the decision and help me be able to get the disability that I need well I'm seeking treatment plus does somebody have a drum roll. The Doctor who seen me for my third bout with covid who gave me my positive covid reading has given me a diagnosis I am now listed as being post covid I am now considered a long hauler which means when these tests come back it'll add me in getting the disability that I need and it won't be hung up in court I want to thank every person every counselor or physician that might help us on this website I want to thank every other sufferer and survivor and those who have rocked it and overcame these obstacles I want to thank you for the bottom of my heart for being there for talking me through and helping us support one another and I want to offer I am a message away if anybody wants to talk or just needs to vent I'm here I'm usually a very positive person I don't normally give up very easily I wasn't born that way I might be a lot of things but I'm not a quitter and then one more I want to thank God for seeing us through the lights are path that heals our sicknesses in our diseases and protects us to God be the glory and God bless each and every one of you.n

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I am so glad that things are getting better for you! I have seen some improvement in my health in the past week. I now have more energy to get back to some of my activities, although I have to modify and make sure I don't overdo it. I still need lots of rest. I even went back to one of my dance classes on Thursday. Boy did that feel good! I am not fooling myself though. I know it will probably take many weeks to come before I even approach normal. Oh yes.. I look a lot better too.
Keep up the good work! You are doing great.

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@lolaruns99

I can understand your frustration. I’ve had long covid for over two years now. Is there anything in particular that you are seeking and not getting help for? I’ve had a lot of trial and error with treatments,doctors and meds some things were a success and some not but I’m definitely doing better than I was a few months ago so if I can be of any help please let me know.

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Help, help help

Yes, the nasal dripping, and I also have incontinence and neuropathy in my feet and I live in very cold climate and it seems to worsen because of the cold. In fact, when I go out the cold air seems to lock down my lungs have you had any problems with this and is there any medication you can take? I’ve had a lot of shallow breathing recently, especially when I stand up and I’d like to know what’s causing this? I’ve had a little bit in the past, but it’s been exacerbated in the last couple of weeks.

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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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I understand the frustration you feel but please don’t give up. The next place or doctor you see might be the one who has an answer but it does seem you need a break. Please give yourself permission to rest and be good to yourself. I have had long Covid for 3 years and suffered through so many issues. I,too,have had ups and downs so I understand. I have to take breaks from the constant search for answers. Then I go back to it. Hang in there. Ignore the insults and arrogant doctors. Take the learned knowledge of a professional (you’re paying for it) but take little else. Then soak in the kindnesses and true caring from the good ones. Sometimes doctors don’t realize they can do more harm than good. But just like the negative persons can hurt the good ones can help. I wish doctors, staff, and others realized that a kind word and gesture may help a compromised person feel better well past the moment it is given. Our mental or emotional parts may need healing,too. I was in the hospital recently. I saw several doctors on a particular day but the one who made the difference (in my mood and feelings) was the one who quietly walked over to my bed, looked into my eyes ,squeezed my arm and said, “you’re going to get better. I will pray for you”.

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@lolaruns99

I can understand your frustration. I’ve had long covid for over two years now. Is there anything in particular that you are seeking and not getting help for? I’ve had a lot of trial and error with treatments,doctors and meds some things were a success and some not but I’m definitely doing better than I was a few months ago so if I can be of any help please let me know.

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@lolaruns99, I'm just trying to find resources as mine are running dry today.

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