Monday, September 29, 2014

A Letter to my Critics

I received an email response from an excellent artist who said she read my blog in which she "found interesting"  and expounded that it appears that my problem along with many others is the "amount of sh*t we receive".   In thinking about this, I could not agree more.

I was stricken down with a life changing disease in which all my systems went kaplunk; neurological, muscular, endocrine,   and my life took a nasty turn for the worse.   Something happens in the brain when this happens, panic ensues, despondency kicks up, finances fail and the list goes on*.   These are things that are not in our control.   As a result of this loss of control then countermeasures are employed, much like a parachute that is pulled when you are screaming to the earth at 100mph.   Common wisdom tells us that there are safety nets that should be there but in reality they are not.   Countless medical opinions, requests for disability were snuffed, friends and family quietly disappear and so on.    I had few come forth with any viable solutions and those make up less than 2% of the people I have encountered along the way.   I found out that people have no interest in the welfare of others, they are simply too busy pursuing the things that matter the least.

*In fact this out of control situation creates more cortisol which causes more immune, neurological and endocrine problems

I am not alone in this since I do have an online community of people who suffer like myself and their complaints are carbon copies of my own.    Sadly you become a bullseye for the self proclaimed experts who in reality have no concept of the situation, but insist they do.    They could not be further from the truth, the difference is that have no self realization.    I have always felt that ignorance breeds arrogance and I think it is very true in this situation.

I have found that American Society is arrogant and contemptuous in this regard and I have found that fighting this is a terrible waste of time.   One of things that fails me is the basic understanding of people.

Lets start with some of the basics.

1/  I did not chose to be like this.   Yes, it is a fact that circumstances are many times out of our control.  
I live in constant pain or perhaps agony is a more relevant term.   This agony envelopes the physical, emotional, mental and the spiritual parts as well.

2/  I subjected myself to the medical 'experts' and was failed countless times.  They are rich in opinions (which are excuses by the way) but lack any meaningful remedy.

3/  My disease cost me major money not only in terms of medical testing but in potential earned income.

4/  I was socially isolated due to the fear and contempt of my peers.

5/  I was told this was all my fault which is absolute bullsh*t.

6/  CFS/ME is a real disease.   Sorry we didn't make it up so that people feel sorry for us, or make it up to get out of work or because we are mentally ill.  

7/  My Citric Acid cycle was measured at 125 with the mean being 500-2000.    My critics should know something about ATP or the Krebs Cycle which are both basic biochemical reactions on which all life depends on.   I would hope they understand about electron transfer and the nutrients that are involved in ATP production.

8/  CFS/ME is vastly understudied.   CFS/ME affects all processes of the body, it is just as disabling as any other chronic neurological/immune disease.

9/    I was infected with a parasite that steals ATP.   This means I cannot produce cellular energy.   

10/  There are multiple etiologies of CFS/ME including viral agents, stealth bacteria, heavy metal poisoning, genetic disturbances and the list goes on.   Quite likely there were viral agents that predate this and in fact may have disabled the immune response to begin with.   Excessive vaccinations from my Military service played a role in this as well.  

11/  When ATP is down then all systems are down.   Does this make sense?   

12/  Adrenals play a key role in human health.   My critics should be experts in adrenal functions such as endocrine involvement, hormonal health, fight or flight.  

13/  When one is sick, they are disabled.  Disabled is the polar opposite of enabled.   

14/  When one is disabled, it affects their enabled-ness which means we cannot do the same things as you, including vocational tasks or other ways of making money.  Our views and aspirations are not the same as the 'normal'.   We fight to survive and have the hope of prospering one day.  

15/  When one cannot earn money at the rate of others then you cannot do simple things.   Money is a resource and we need resources in order to survive.   

16/    Sickness is traumatizing.  

17/  Sick people are not stupid people.   I have many friends who are quite intelligent and for myself belong to high iq societies  that are more exclusive than Mensa.  

18/  Managing sickness is a full time job in itself.  In addition to this I work a full time job, devote much time to medical research and economic theories.    I have spent an estimated 20,000 hours in medical research, testing observational trial and error. 

As disabled people we get sick of the 'if I were you' statements, the gossip and character destroying talk (Note: if you have something to say about me please get some stones and say it to me and not to others), please do something to help me, that is all I ask for (and lets not get into the idea that if you offer something, I will take everything which is quite offensive).   I am an intelligent man who has great integrity, I persevere, I suffer with the goal of being a great human being.    

My Circulum Vitae of Medical