long haul viruses

Posted by alineechelard @alineechelard, Oct 9 10:54am

if you have a long haul virus and don’t know what it is how to get help?

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@shelleyw

sueinmn,
Thank you for your reply. I appreciate your time and knowledge. I had to ask for the medication from one doctor and get told how to use it, from another doctor, on a virus that does what, when, how it wants.
I respectfully disagree that it's like a pimple or a bruise... I had to cancel a, hopefully, life changing surgery 2x due to maybe I was headed into an episode. Not one doctor checked my chart to see that I have 3 autoimmune diseases, with the possibility of 2 more. I am not on meds yet, I will resist them as long as possible, so I'm not formally immunocompromised.
Again, respectfully, please don't make excuses for doctors being overwhelmed. it is demeaning to me as a person/patient. In my life, before my health decline into hell, I was an Enrolled Agent and owned an accounting and tax company. I was forced to sell cuz of my cognitive impairment has made me stupid. I don't know anyone that would have said, "she is overwhelmed and busy ", if an IRS audit letter showed up in a client's mailbox. Neither the IRS nor the client, nor myself would have cut me any slack.
We are all fortunate that the internet gives us access to such valuable information and groups like this one.... but if we tell our doctors where we got our information, in my experience, I am totally dismissed by all doctors.
I am not venting on you at all, I am respectfully expressing my real life concerns. Please don't denigrate the patient, while excusing the doctor. We need the truth of course, but we need you as a mentor to be on our side, desperately.
ShelleyW

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100% correct.

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@shelleyw

sueinmn,
Thank you for your reply. I appreciate your time and knowledge. I had to ask for the medication from one doctor and get told how to use it, from another doctor, on a virus that does what, when, how it wants.
I respectfully disagree that it's like a pimple or a bruise... I had to cancel a, hopefully, life changing surgery 2x due to maybe I was headed into an episode. Not one doctor checked my chart to see that I have 3 autoimmune diseases, with the possibility of 2 more. I am not on meds yet, I will resist them as long as possible, so I'm not formally immunocompromised.
Again, respectfully, please don't make excuses for doctors being overwhelmed. it is demeaning to me as a person/patient. In my life, before my health decline into hell, I was an Enrolled Agent and owned an accounting and tax company. I was forced to sell cuz of my cognitive impairment has made me stupid. I don't know anyone that would have said, "she is overwhelmed and busy ", if an IRS audit letter showed up in a client's mailbox. Neither the IRS nor the client, nor myself would have cut me any slack.
We are all fortunate that the internet gives us access to such valuable information and groups like this one.... but if we tell our doctors where we got our information, in my experience, I am totally dismissed by all doctors.
I am not venting on you at all, I am respectfully expressing my real life concerns. Please don't denigrate the patient, while excusing the doctor. We need the truth of course, but we need you as a mentor to be on our side, desperately.
ShelleyW

Jump to this post

I'm sorry, Shelley - I was in no way attempting to denigrate you, but when I mention the overwhelmed doctors, it is true. As the owner of your own company, you controlled your own workload, even though you had busy seasons in your year - in clinics, practitioners do not. My primary left her practice when they increased her patient load first from 1500 to 2000, then 2200 and finally 3000 - she was destroying her own health working 75-80 hours per week while being paid for 54 hours. In this past year, 4 of my specialists have retired early due to untenable workloads and corporate cuts in the amount of time they were allowed per patient. My formerly 45 minute pulmonology appointments are now allotted 30 minutes, increasing her patient load from 12 per day to 16 - and this includes her time for documentation as well - no wonder she often returns phone calls or answers emails at 8 or 9 pm.

I continue to advocate for patients and their care both here on Connect and in three organizations where I serve as a voice for patients (universally) trying to change the direction of modern medicine.

I too have had procedures cancelled or delayed for things that seemed "small" to me - an unhealed laceration on my leg when I needed hand surgery, and another time canker sores (another form of herpes), so I know the frustration you must feel.

Again, I apologize that you felt disrespected, and I will more closely review my replies in the future. And I won't quit fighting to improve medical care, either on the patient or practitioner side.

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@sueinmn

I'm sorry, Shelley - I was in no way attempting to denigrate you, but when I mention the overwhelmed doctors, it is true. As the owner of your own company, you controlled your own workload, even though you had busy seasons in your year - in clinics, practitioners do not. My primary left her practice when they increased her patient load first from 1500 to 2000, then 2200 and finally 3000 - she was destroying her own health working 75-80 hours per week while being paid for 54 hours. In this past year, 4 of my specialists have retired early due to untenable workloads and corporate cuts in the amount of time they were allowed per patient. My formerly 45 minute pulmonology appointments are now allotted 30 minutes, increasing her patient load from 12 per day to 16 - and this includes her time for documentation as well - no wonder she often returns phone calls or answers emails at 8 or 9 pm.

I continue to advocate for patients and their care both here on Connect and in three organizations where I serve as a voice for patients (universally) trying to change the direction of modern medicine.

I too have had procedures cancelled or delayed for things that seemed "small" to me - an unhealed laceration on my leg when I needed hand surgery, and another time canker sores (another form of herpes), so I know the frustration you must feel.

Again, I apologize that you felt disrespected, and I will more closely review my replies in the future. And I won't quit fighting to improve medical care, either on the patient or practitioner side.

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sueinmn,
Thank you, for getting that my reply was sent with respect.
Yes, as a business owner I could make my own hours. Which means I worked 3x as hard as anyone of my employees. As the owner, I worked year round.
Thank you for advocating for us all. ShelleyW

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