I've been caregiver for a mother plus son.

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Dysautonomia takes control over our lives and is progressive & as a result temperature & a quiet space to rest vs trying to live a full life, (metaphorically with a life threatening ball plus chain attached to our ankle) to wreck our body at any given time. Pain will enter our lives at some point and physicians may tell us our combined illnesses make us too complicated to treat whereby doctors mostly want just one easy to treat illness. Bottom line pain doctors may refuse to help us attain releaf we need in order to carry on our lives.

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    I know what you mean Terry, I have been dealing with this for about 12 years. Doctors no longer do the work involved to diagnose and then treat the ailments. It is about a quick visit like driving cattle through a chute. I get virtually no help from the VA and I don't have the means to find outside help. The heat in Arizona is brutal and now I just lay in the house and wait for cooler weather. This is a life controlling illness that no one can relate to unless you are blessed with it. Every day I praise God for shelter and air conditioning. By blood pressure and heart rate are out of control and I  have suffered numerous black outs, tilt table test says I have dysautonomia but the doctors don't know what to do about it and VA won't authorize outside treatment.

    I send blessings and prayers for you Terry, I do understand, Ken

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    • Posted

      Ken. Thank you for understanding my experiences. I took wonderful care of my past wife Paula as I held her hand & entered psyc wards by police order and I kept her safe and clean til doc allowed me to take her home with Parkinson's plus Alzheimer's til she passed. My reputation of wealthy caregiver brought me Dysautonomia nurse wife plus her Dysautonomia son to care for. Nurse doc did abandonment of a chronic pain plus opiate dependant patient iron clad. Doc tried twice to terminate her including hiring mercenaries with inspector general badges to grab her because doc was afraid of nurse testimony during jury trial. I saved nurse life 5 times as I gathered evidence which proved doc lied using power of his medical license to eliminate her. Hardest work I ever undertook even more commitment than swimming with Olympians during my college years. Bottom line be the doc has millions and therefore no attorney will take my case because too costly time plus money for a medical malpractice attorney to commit to win. The nurse turned out to be a black widow even when I cared for her every need each half hour 24 hours a day as her health and life is not good. Time to begin again. I know exactly what I need in my life because I took such good care of people whose hearts be evil.

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    • Posted

      Ken. How much pain are you experiencing due to your illnesses? What do doctors say your potential lifespan be? Mine is a collection of different problems I've grown to understand as well as my former Dysautonomia wife's every illness and temperature requirements plus her potential life span which should have ended in 2016 she explained.

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  • Posted

    Hi Terry, I am so sorry for the situation you find yourself in. My dysautonomia is thought to be caused by traumatic brain injury (TBI). I have been suffering since I returned from Vietnam in 68 and herein lies the problem. I am a 100% disabled veteran and I get all my health care through the VA. I have numerous illnesses I think are caused by Agent Orange along with the Dysautonomia. VA has one purpose, that is to reject or discredit any claim due to military related issues. I have had several cancers removed from my face and and acne vulgaris but again VA denies the connection. With the Dysautonomia, I have severe migraines, constant sweating, watering eyes, ringing ears, blurry vision, uncontrolled blood pressure and heart rate. I have vertigo and black outs which have resulted in more TBI plus skull fracture, concussion with bilateral bleeding. I have tremors to the extent I take 600mg premidone daily and still need a spoon to eat salads. My lungs are bad, (COPD & Asthma) and am on oxygen at night and a boat load of meds and inhalers. The VA is good to pass out pills but they are not interested in helping beyond pills. I had a pace maker put in 2014 after a blackout. The swelling in my hands doesn't allow me to make a fist and bending my fingers is torture. When I talked to my rheumatologist about it she just said "well you are 71 years old now." I just praise God for shelter from the elements and AC. There are so many issues, I just put it in God's hands and ask for grace to carry this load without putting the burden on others.

    Well Terry, that is where I am at and if you hadn't ask I wouldn't have gone into it. My wife is the only one who knows what I am going through, it is not something I talk about. I praise God for a wife who has stood by my side for 49 years and took early retirement in 2007 when I could no longer take care of myself. I have recouped and am able to drive again although I can't do much physically.

    Terry, it is almost impossible to write out everything AS you know. I do what I can and try to help where I can. As a caregiver, I know you carry the other end of the load and God bless you for that. Not many people can care for one let alone two and it has to be so taxing.

    I send blessings and ask our Lord for strength for you as you bare this burden.

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