Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “April 30, 2020”

The Best Source For Covid19 Info

I have on several occasions during this pandemic, the fact that I am considered “high risk,” meaning that I have a higher chance of not only contracting the virus, and possibly dying because of it.  Worse, my susceptibility, especially during the incubation period, or “ability to spread” is likely to have more of an impact on those around me.  So yes, I definitely take as many if not all of the precautions necessary so that I do not come down with Covid19.  Many would consider that courteous.  Most would call that smart.

But when it comes to advocating for others, regardless if they are high risk like me, or of average health, there are some who do not describe my efforts as courteous or smart.  They call it “fear mongering.”  The Google definition, similar to every other source, of “fear mongering” is “the action of deliberately arousing public fear or alarm about a particular issue.”  In order to do this, there has to be an agenda.

All of these raise a public concern about a legitimate concern, a fire in the home, a car accident, someone breaking into a home, and a pandemic.  All serve a deliberate purpose, to protect you, not to cause fear, ALL OF THEM.  Having a smoke alarm does not mean your house will catch fire, wearing your seat belt does not mean you will be in a car crash, and using a home security system does not mean your house will get broken into.  Neither does awareness of the number of incidents of cases of Covid19 and their deaths.  All of these things are meant to bring awareness to a very serious concern.  That is not fear mongering.

Now of course, I immediately get called out, making accusations about using certain sources, and being “left leaning,” as to infer a political lean that I do not have.  I am a registered non-party.  I have no lean.  Being a college educated individual, and one of the first things I learned writing term papers even back in high school, you need a variety of resources.  As a rule, I stay away from any that is definitely right or left wing biased.  But when I rely on media information, I take everything in, and then form my opinion.  Just because my though may agree with you, does not mean I agree with your party.  Just because my thought may disagree with your ideals, does not mean I have an agenda.

For the most part, I have something much more reliable than media sources.  Yes, they may give me ideas, but then it is up to me to research.  Before any government official, I will always trust my doctors and scientists.  Several of them, belong to very prestigious  and well-known and reputable medical facilities.  The doctors that I deal with, are the best as far as I am concerned.  And it is not just their skills that earn them that description, but who they are.

An older picture, but this is one of those doctors that I rely on for information.  He is the most knowing of the many health issues I have due to my treatments for Hodgkin’s Lymphoma.  This has been his life for decades.  But now, in the days of Covid19, he is taking on an even more critical role, helping me, and others like me, from having to deal with the virus, or what to do if unfortunately we do contract the virus.

Arranged by Hodgkin’s International, an organization created and run by survivor’s of Hodgkin’s Lymphoma, my doctor participated in a webinar yesterday, at no charge, to speak to, and to answer questions from not just some of us who were patients of his at one time or another, but all participants in the chat.  Let me say this again, he took his own time, to talk to us, and answer questions about how to get through this crisis.

My doctor is a strong believer in the CDC, and carries many other high credentials and ties to major medical organizations and facilities.  Because there were so many of us on this call, he was sent the questions via chat, which actually kept things very organized, and time was not wasted trying to get everyone to be quiet and not talk at once.

You knew right from the beginning, his audience, us, already knew the importance of protecting ourselves not just during this crisis, but with any potential illness.  He mentioned the need, for us to do what we already do as long term survivors, “listen to your body”.  Many survivors already run low grade fevers as it is.  But if we definitely do not feel right, we need to act.  And not just act, we must advocate.

The good doctor knows the many struggles many of us face in getting the average medical personnel to listen to our histories and respond appropriately.  Part of his care, is getting his patients to educate themselves, and then, to advocate for themselves.  Just as importantly, if possible, have someone with you to advocate along with you such as a family member or significant other.

He went on to explain the situations that lead to us being high risk, not that we needed proof, but coming directly from him, it is a validation that we know the truth, we know what we are talking about.  He started out talking about radiation therapy exposure to the chest area (lungs and heart).  Then he mentioned the drug Adriamyacin, some of us refer to it as the “red devil” because of its color and deadly side effects, (heart), another chemotherapy drug called Bleomyacin (lungs), and of course the spleen being removed (immunity).  He also mentioned the importance of blood pressure control.  I do not know about the others on that call, but I check off all five of those boxes (along with being diabetic as noted by the CDC).

And though all participants take his words as being all we need to hear, he mentions that he supports Dr. Fauci of the CDC and the recommendations that have been made.  He believes that the recommendations are not just the best for us, but for everyone.  But he strongly recommended to those of us at high risk, to continue our efforts to remain sheltered as much as possible.

There were other issues that had been discussed from returning to work, especially in an environment that may pose an increased risks, and the need to recognize patients rights under the Americans With Disability Act and Family Medical Leave.

I do not think we really ever got to discuss about potential treatments, and probably for good reason.  There is none yet approved.  His concentration was on prevention and action.  But he did answer one question on unknown, a vaccine.

Perhaps one of the most important thing for those of us who immuno-compromised, are vaccines.  All of the doctors know how resistant I am to getting any, there are times I submit, but not without major heel-skidding being dragged to them.  I am not anti-vax by any means.  But I am selective.  A conversation I once had with the doctor when he asked me why I do not get the flu vaccine (at the time never in eighteen years), he responded how lucky I would feel standing at a slot machine pulling 18 straight winners, and then going for the 19th pull.  What were my odds that I would keep winning?  He did not necessarily change my mind that day, but he has been able to convince me of the vaccines that do have the potential to prevent me from facing certain illnesses, likely to lead to death.

In our long term survivor community, vaccines are recommended, but not all of them.  One of the worst illnesses for many of my fellow survivors to deal with is Shingles.  Yes, there is a vaccine for it, but up until a year or two ago, we could not get that vaccine, because it was made with “live” virus.  That would kill us.  Recently, a new vaccine has been created with “dead” virus, and some have been given the recommendation to get that shot.  Flu vaccines are the same way.  Even when my daughters got their polio vaccines, a “live” vaccine, that actually bought me a time out from diaper duty because the virus would come out in the diaper, and I could not be exposed to that.  Other than that, I assure you, I changed plenty of diapers.

The last vaccine I faced was for “swine flu”.  But Covid19 is a completely different virus.  As of right now, there is no vaccine.  And when the doctor was asked if we should get the vaccine when made available, we got the answer we already knew.  “It depends.  It depends on whether ‘live’ or ‘dead’ media”.

After over an hour, we not only learned, we reinforced, and we also realized who we needed to rely on during this crisis, ourselves, each other, and the ones who know best.  Ourselves, fellow survivors, and the medical field and scientists.

Presidents, Governors, County Commissioners, Mayors, Economists, none of them are going to get us through this crisis, because without dealing with the science of this virus, there is nothing else left to worry about.

So that I am not perceived that I am fear mongering, our numbers are going down.  That means that the efforts and sacrifices that many of us are making, are working.  Imagine if 100% of everyone did so.  But until we actually hit zero in cases, or eradicate the virus, we have to keep on with our efforts.  I will wear my mask to protect you from me, and I will do my best to avoid situations that would prevent you from doing the things you would like to do, just because I am high risk is not your fault.  But is it really that much to ask for you to wear the mask as well?  This could have been so much worse if it were not for the efforts of so many.  It could end even quicker if we all gave a damn.  Not fear mongering, not trying to steal anyone’s freedom or liberty, just stating a fact.

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