I am back on my journey

Good Evening Friends :) :

Did you think I quit or died? Well I thought both were options. I went down and took a real nose dive. I have been too sick to even care if there was a tomorrow. Have you ever had one of those kind of episodes? Well mine turned into weeks and months there for a while. The brilliant doctors I have seen just give me the doe in the headlight look and said “I don’t know.” Or I get this look like well what did you do to cause this? I get sermons. I get ignored. I get everything but help. All are doom and gloom about my life and my future, saying my life however long is going to be difficult and not turn out the way I wanted. Daaah? I already live that one. I truly dislike being treated stupid and talked down too. I can correlate it with the deafness friends without a doubt. I was ill before I went deaf. I am treated differently now and it is very much in a negative light. Deafness truly is profiled and so far I don’t like any of the ways I am profiled especially by the very people who are the very ones who are supposed to be helping me.

I believe there is a purpose for all of this and live totally by faith. I know now that faith is the foundation for all of us and without it you are vulnerable to being a victim and to losing hope. So please keep the faith and share it with others.

OK, let me move on and get this out to you and out of my system so I can move on also. Let me start by saying that I have always believed we are all one and that within all of us we hold the same light that connects us together. Someday I will write about that but for now just humor me. I need to share with you where I am now on my journey with the hope that you will be enlightened and with the hope that you do care as I care about correcting what is hurting all of us who are or will become medically or mentally disabled and/or deaf. I am hoping there are people who will read this entry as one who is also challenged physically and/or mentally giving you some encouragement, some enlightenment. Most of all to encourage you to keep the faith and to get in the fight for change in your own circumstances but also through me sharing my story you will see the many wrongs that we need to become active in changing about our broken medical system. Those of you who are fortunate to be healthy that are following along out of human interest I hope you put the emphasis on keeping yourself as healthy as you can. I also hope that through my sharing my journey you will become enlightened and reach out to learn more and become active in changing our broken medical system that Hilary Clinton, Kennedy and so many others are fighting for in Congress. Don’t wait until you or a family member becomes a victim to what I had to find out the hard way and still go through fighting for the right to good health care so I can live, have quality of life and have the opportunity to make my dreams come true without discrimination. I just want the opportunity to show what I can do without being profiled.

I am hoping that as we travel down this road that challenges us that through my writings you will be able to avoid being a victim of ignorance like I was and end up paying a lifetime price for your ignorance.
My writings will stay honest and true to my experiences. They will cover everything that you could encounter so you should be able to protect yourself by learning from my 20 years of experience, research, development, losses but most of all enlightenment.

Finally, through my writings I hope to inspire everyone to wake up to the fact that we have a nation wide problem that will eventually affect all of us some of us sooner than later and some of us for a lifetime. We all need to get in the fight to change our medical system, our government, insurances, the drug companies and take back our medical system making it work for “ALL” people. Not just those who feel they are privileged and protected. The bottom line is if we don’t get passionate and motivated by the time the 78 million baby boomers hit their Geriatric years it will be too late and we will all suffer the consequences. We must get our legislators to pass “laws” that cover the medical system and all those who have a hand in it. Just like all other businesses, the medical system is too big too out of control for the good ol boys of the AMA to oversee with rules and regulations. We need to “laws” that take the power and control away from the business of medicine and put it in the hands of the law just like all other big businesses. In fact more so with the medical system as it is one of if not the largest income producer in this country and no one is at the helm. All aspects of our medical system are now “big business” and everyone should be held accountable to a part of the government that is supervised by a group that’s only interest is to make sure laws are passed and then to oversee that these laws are enforced. When the laws are broken we the people should have the right and the ability through the courts for recourse. Those who oversee all aspects of the medical system should take complaints and if there is credence an investigation should be implemented making those responsible accountable.

OK as usual that is my soap box for tonight. Let’s move on to where I am and what I want to share with you as we get back on our journey.
So sit back, get a drink, get comfortable and let’s start back on my path to victory. I am behind and need to recover from my major set backs. But there is a lot happening daily so I hope to be able to keep up and write as much as possible.

WHERE I AM NOW ON MY JOURNEY:
Now my road to recovery is two fold. I obviously want to get well so that I can feel good and be Joe Citizen again and just maybe more. Plus I can not endure the pain, all the complications, losses and what will happen to me as I age and have no resources or anyone to take care of me. What a nightmare that is to imagine. So my fight is for my life my friends and I have to win. Second fold is my work. I am a functional intelligent woman who has something special like all of us have, to give. I believe I have the right to have the opportunity that I would have had if I never had gotten ill or went deaf. I am denied this and profiled without even been given an opportunity to plead my case. According to society, I am not perfect anymore so I am a “throw away” I call it but being in Behavioral Health I can tell you no one is perfect be it physical and/or psychological despite what Tom Cruise and John Travolta say :) ignorance and fame what a formula.

Sorry I digress.
I can only speak for me but I am being denied my rights to get the basic help I need so that I can be given the chance to show what I know and what I have to offer.

I truly believe it would be a sin if my Life-Rules Technique, my talents and expertise that I developed are not given a chance based on profiling because I am deaf and disabled. Why does that knock me out of the opportunity to compete? Let my work speak for itself just like when I could hear.
This is my life and being disabled and deaf has nothing to do with what my capabilities are. All the laws in the world can not be enforced. They just use another excuse. So I am on my own and trying to start my own business but you need backing. I have gotten so far as to be incorporated but I need help with my web sites and a webmaster as that is not my specialty. I am up and running. I have everything in place and am ready to launch my business except it needs technical fixing to make all the changes so I can run my sites as a business. I am stopped, since Vocational Rehab in the state of Arizona has denied me any assistance based on one young lady who is trained in blindness not deafness just blind people’s needs. I was never seen by a doctor or interviewed by anyone who is trained in deafness. At first she said it was the wise thing to do support me in starting my own business and the VR would help me get started. Then without contacting me or telling me why when I contacted them denied me any assistance. No follow up, no further review just “Silence”. Pardon me but that I already get on my own.

WHAT IS STOPPING ME:

In our Health care System, it is the doctors, who have the power. The patient has little choice except to comply if they want care. That doesn’t even guarantee you good care or care that works for the problem you are having, just an appointment. They also have changed the rules for an appointment. Some doctors request that you send your records to them and they assess them and then decide if they want to see you or not. Then you will be notified by the receptionist whether you are accepted or not for a consultation. By then you could be dead. They cover emergencies by dumping them on the ER’s which are over loaded as it is and should not be seeing people who are not true emergencies. Our ER’s treat patients that should be seen by Urgent Care Clinics or doctors. ER’s should be for true emergencies. This is another problem that needs to be addressed and soon. Phoenix has the longest wait for ER’s than any other big city 4 hours and that is because of the dumping syndrome, I call it by doctors offices. Medicine is truly a “business” now at least in Phoenix Arizona. It is flourishing here because Phoenix is one of the fastest growing city in the country. This is not just my opinion as a nurse and a patient. Techs and Nurses talk to me because I am one of them all have validated what I am writing here. This is without me saying a word about how I have seen doctors collaborating with profit making corporations turning the medical system into what is now coined “5 minute medicine” and charge amounts that most of us cannot afford. No money, no help. The caring has gone out of the practice of medicine here. They keep the ratio of doctors to patients disproportionate so these doctors have 3 and 4 offices plus investments in clinics, scanning machines, scanning clinics, outpatient clinics, day surgery centers, labs, you name it the hand of doctors is in there somewhere and it is big business my friends. Many doctors will not take Medicare, some will not take insurance at all, cash up front and many will not take Medicare assignment, which means they accept what Medicare pays and that is all. You can’t get rich off Medicare assignment you see. Most are open only 3 to 4 days a week and the rules you must follow are lengthy. Like 72 hours for refills on medication. I would say doctor overload and nurse usage under load if it takes 72 hours just to ok a refill. Many of these corporate owned offices do not even have RN’s. They use techs dressed like nurses or they use their receptionist. It really blows my mind and everyone takes it without question because many are from a generation where you could trust your doctor and the medical system. Many people like I was, are just ignorant and “assume” they are talking to a nurse and that the doctor cares and will do only what is best for them at a reasonable cost. The business of medicine is the only service oriented business that makes you pay up front or at least pay for services whether you get any care or not. Medical Care is not held accountable to anyone except the AMA and Joint Commission. Doctors “choose” whether to see you or not based on unknown criteria and if they do “choose” to see you that is all they have to do is see you. Sometimes I am refused care.
You have to pay charges on top of insurance or Medicare whether you receive any care for your time and money or not. What is that all about people?? Our cars get better care and guarantees than our lives do. We would not stand for this in any other business why do we stand for it with the most precious part of life our health. It is true without your health nothing else matters.

This was a Two Pointer, one you just read and now the second, which is on the personal side since I am having real problems dealing with this kind of medical mentality and the take over of corporations.

I am writing about this because for me, I am stopped friends, because my resources have been depleted trying to get the medical care I need, medications, equipment and what is left if anything I try to put into getting my business going. I live on Medicare disability. I am looked upon as indigent. I am unable to get the medical care I need, the equipment I need so that I can try to get my business going and become a functional part of society again and self fulfilled because I live for my work and want to finish it. I want to be functional and contribute to helping make this world a better place to live. I have the degrees, the experience and the skills but I am stopped cold even with my own business sitting here waiting just waiting to get started.
For my disabilities, I need medical care that supports my symptoms so that I can work. What is called palliative care. For my deafness, I need two basic things that I should have the right to so I can become a part of society, the work world and be able to make a living and support myself. I need hearing aids that help my level of deafness and the FM system so I can hear enough to work just like someone who can hear.
It is out there I just can’t get it. Why? Well that is what I want to find out.
I have everything done except for what disability promises for the deaf so they can work and not be discriminated against. Here they are discriminating against me. I thought disability wanted to help you get off it and back into the work force not keep you on it
Here I am investing my life and doing all the work to get back on my feet. I did all the work to set up a way to work taking into account and working within my limitations. Yet creating a place for my years of experience, degrees and skills that is very necessary and would allow me to be self sufficient so that I could be a useful, productive person again giving back to society instead of rotting away at home trying to find a way out of this nightmare. I am capable. I don’t want to be indigent getting my small check from the government. Yet I can not get the two basic things I need hearing aids for someone who is as deaf as I am and the FM system so that I can hear enough to be able to work. Or the medical care I need and the help from Vocational Rehab and the Government so I can get my business going and be self sufficient.
To top it off I live in the state that needs my services the most because Arizona has the worst rated school system in the country according to the government statistics. Hey Senator McCain I got something that could change those stats!
John McCain needs to focus on his own state before thinking of running this country. He needs to straighten out the medical laws and medical treatment. He needs to back the Governor who is fighting hard to change the school system in this state. It is her first priority and she works hard at fighting for all the kids in this state to get the kind of education they need to make it in the world plus raise our status in the country as far as having the poorest ratings on testing. I just may have what could help her. I hope I get that chance some how some way.
My resume is on all the on line sites for jobs and I get many offers until they hear I am deaf, then they don’t call back.
Yet if I have state of the art hearing aids to give me some ability to hear and read lips. Then if I put the FM system on them I would be able to hear enough to run my business. There are doctors who went deaf like me out of nowhere when they were in medical school who I have read about that are teaching medical school and practicing medicine using the FM system. That is how I found out about it. There is one at Harvard that I read about and one at the University of Michigan. I am sure there are more but these two I read about and they gave me hope that I too could make my goals a reality.
I am deaf not stupid all of a sudden. I can make my business a reality with these basic hearing equipment so Vocational Rehab should be required to help me. How they concluded that I am unable to work for life I don’t know and can not seem to find out. I am going to write my Congressman and see if I can find out. But Vocational Rehab won’t even return my calls. I even had the University here that works with deaf people like me write requesting aid for me to get the hearing aids I need and the FM system so I could do the basic living skills, be able to care for myself and WORK.
I have to have my 82 year old mother go with me everywhere to interpret for me as I get confused and scared when I am out. I lost so much more than my hearing and people get real impatient with me to where I get real beat down and don’t want to go out. I am working on this problem but it did take the wind out of my sails. This is not healthy people and I should have the right and basic help so that I can go out. My mother should not have to be my caregiver at 82. The University also said that with the right equipment I could work from home running my own business and asked Vocational Rehab for help financing the hearing aids I would need with my kind of deafness and the FM system VR turned them down.
So that is where I am on my journey today.

Who knows what I could do if I were given a chance.

Most of all I want to hear the rain again, talk to people, not to be a shut in 24/7 unless my mother can go with me.

Talk to you tomorrow tune in. I am hoping I am back and that my health is going to hold so that I can continue my journey with you.

Thank you for coming to my Blog on being disabled and deaf.
Good night,
Mary-Anne

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