Monday, February 27, 2017

Cancer Survivor ....Health Insurance 101...Today Is a Big Day

Today the President is meeting with Health Insurance Executives.......so let's have a non partisan talk about the stakes.....

A few reminders....

1.  Health Insurance Companies have one of the largest lobbies in Congress in recent history.....all parties.....campaign contributions are made...many folks on both sides bought a long time ago.

2.  Health Insurance Companies are responsible for 5 per cent roughly of the entire GNP of the United States.....That truly is huge. And I mean truly huge with no pun intended.

Health Insurance Companies are powerful.......really powerful .....we let this happen over a period of about the last 50 or so years regardless of who was president.

No matter what happens....The Affordable care Act does need fixing without a doubt...it was not well designed because of insurance companies requiring a certain amount of power and profit.....see my prior posts.

But what is at stake...?    Your life and your money.....

You must believe that decent healthcare is a human right as a citizen of this country.
A pre existing condition should never deny you insurance and/or decent care.
There should never be a cap on coverage.....many would die in the streets

Science and research should be supported always.

This is not a party issue...this is a life issue.....Next post discusses real coverage.

I was joking with a friend saying that I hope that I don't die during all of this political insanity!

Opposition.... without Hate....that is me....I want to fix healthcare.....its so broken!


Sunday, February 26, 2017

Cancer Survivor............Thoughts on Cancer Survivorship

I find it hard to believe and not that I keep thinking of things to write about.  I think sometimes is there anything that has not been written about in cancer at this point?  And then I realize I must keep writing.  I have no defined agenda except to help someone.....I think often of a book or series of books but at this point I am so very tired ......this is easy....writing here is easy....these days I love easy.......so here we go...

I have wondered about death for a very long time......without thinking that I am dying....April 24th is my 2 year anniversary of my miraculous recovery .....being without oxygen for 40 minutes and eventually waking up without any memory of the entire event!  I have previously written in here about it so I will not get detailed.....I am happy to not remember the medical details of keeping me here.....it was crazy.  My surgeon saved my life.

So here I am now and I think I am dying slowly....but this time really dying.  I am not wondering about it.....I know it.  I have disease in every major organ of my body except my heart and brain...thank you.   Really thank you......for staying out of my brain all of this time.  And my heart.

I know the answers will come....but after this chemo I am not sure what to do next and if I should do anything.  What if I miss the last year ...or whatever of my life because I am killing myself with drugs?   I am not asking for advice.   I am just talking out loud.  Not being able to eat ....sitting on a couch.....not able to go anywhere or do much......that is not life.

I might give it one more shot to see if it is working ....I must...but even if it does work ...what life is this?  It is not.....and what is the goal?   If I get shrinkage.....another huge surgery?   When is there a life?   How far do you go just to stay here?  There are no answers....I will have to figure it out along the way........or not ...sometimes shit just happens and there is no thought process necessary.

I know many of you get this and I am sorry....the folks that do not get it....Thank Heavens for that!


Saturday, February 25, 2017

Cancer Survivor.....The Emergency Room

I have been in emergency rooms enough over the years......it comes with an extreme case ...here are some thoughts......

I understand that emergency room docs, nurses etc are under extreme pressure.  They have to figure out in the shortest time what is going on to save a life.....I love my docs and nurses however they need to understand a few things about smart, extreme patients in the ER

  Practice better listening skills.   This is big.  I still have all of my marbles (lol)....no one knows me better ....my body...my history...than me.    You coming in and telling me what you will be doing before you even talk to me ....No...NO...

As well as trying to give me calming drugs like Ativan immediately once you discover that you actually have to have a real conversation with me....No....I don't appreciate drugs just so that I will lay there nicely and not talk to you...NO

Stop telling me that I am a nervous lady......you will just make me angry and less nervous...thank You...

How to deal with ER people that don't know You....After the initial insults........I said to the nurse...

1.  I have been a patient for over 15 years......I have had about 15 major surgeries....6 tries at chemo....SBRT radiation...etc ...I live with tumors since 2008......doing this since 2001......I would really appreciate it if you would listen to my words and look at my history before we have a talk about everything that you are going to do.   I may be able to help you.  And please stop telling me how nervous I am????    It has no baring on my case or the reason that I am here today....is that correct?

I starred into her eyes....do that ...stare...they must look back and after that everything changed.   If you cant do this for yourself.....find someone to do it for you.  It makes a huge difference in your care.

I dread the day that I can not speak for myself.......I arranged a few folks and my kids to help but I feel better when I take care of myself.  Do You? 




Friday, February 24, 2017

Cancer Survivor.....I am Back.....Update Amy

Well...it has been one hell of a week....I said this elsewhere....Sometimes I have no words about my personal journey of over 15 years.....Sometimes I just sit at home with a mix of wonder, sadness, anger and gratefulness. I made it home once again.....sometimes the gratefulness is lacking....I don't cry much anymore at all......certain things might set me off for a minute.....like a song....or a statement from someone close to me......this journey has been so long......I can not let it evoke such huge emotion......because I know that more bad stuff is coming.

I am still appreciative.....I love the folks that take the time to really care for me or another person....that nurse....that doctor.....friend ...Daughters.....etc...anyone that takes the time to say or do something extra along the way.   That still makes my day.  I always joke that you are born with the caring gene in extreme illness or not.....but I think that it is true.....Some just can not do it..

I hate it when I can not do everything by myself.......Your mind is rushing to accomplish things and yet your body says no!   But I am going to try.....you know that right?   If you have been here since 2009....You know that 15 years of this shit....I am not done.....

I am not done......even if all I do today is type and do the dishes....I am not done...

I hate you cancer....I marvel at all of us everyday willing to do so much to stay here.....we do the best we can......

I am dying on my terms someday.....not yours

The next posts will be a mix of personal and non partisan political.....its just where I have been the last week or so.......in our healthcare system deep....we will talk xoxoxoxo


Monday, February 13, 2017

Off Line Until Feb 16th...

Sorry folks...being a cancer patient is full time work and I must go take care of myself for a bit.

I had an out patient procedure and got a bit behind ...lol....I know right?  Oy

I will be back shortly.   Wishing you all health and fun!

Tuesday, February 7, 2017

Cancer Survivor ....Healthcare Debate 2017..Dear Ted and Bernie

Dear Ted and Bernie....here is one thought and what you missed in this debate...non partisan...

Comparing care here to other countries is nonsense...here is one true story pre ACA

Please meet Jay..name changed...true story...Jay had chest pain for a long time....he was a waiter and going to school.  He could not afford health insurance as a student.  He went to the doctor and had a sarcoma in his chest wall.  He could not get insurance due to pre existing condition.  He died in his 20's because all he could do was go to the hospital that accepted Medicaid.  He never saw a specialist for his care.  He had a few chemos assigned by the Medicaid folks and died. 

This is an example actually of a mix of private insurance not accepting a pre existing condition for real insurance and the government allowing only the minimum of care.

The issue of real patient centered care and insurance is very complicated.

More tomorrow...I am organizing more thoughts to discuss.


Cancer Survivor........Personal Medical Post...Looking for a Sign...etc

Cancer is mind boggling for so many reasons....one post is not enough....that is why I wrote over 550 of them and I still have stuff to say.....after over 15 years ...it will be 16 years in August.  I will be 60 over the summer....at least I am trying.....lately the job is more difficult.....

I only know a few other folks like me.....with continued disease ....a never ending shit storm of medical stuff for so many years...and I guess the fact that it is never ending until you die...however long that is.....that is the hard part.  

Somewhere deep in my snobby soul I thought that I might crawl out of this for awhile.   I thought I might get to a place where my medical procedures would give me a break.....I had two big breaks in the very beginning.....4 years and then 2...but never again.  I have been going with disease non stop since 2008....I always tell my fellow survivors to remember who you were, are and could be.....even in cancer....lately I personally must remind myself even more.  I am tired..

But then comes a sign and the will to fight comes back and I know that it is time to rustle up the troops and forge ahead.....no matter the outcome.   I am still tired!!!!!   But OK...here we go.

What's your sign?  My sign are my kids tears.....when I see or hear tears on the phone. 

My kids were 11 when I was first diagnosed.  I made small goals....to watch them graduate grade school.....then middle school...high school and college...then get jobs, travel and have fun....

I guess it is time for some new goals......and I when I allow my 10 minutes today of sadness, I remind myself how much I actually have achieved all of these years.  Don't forget who you are....I won't.

At least there is still coffee and chocolate...Thank Heavens




Monday, February 6, 2017

Debate Tuesday Night...etc

Please read the prior post about the debate.   You can find me on Twitter at AmyAdvocateLMS.

Facebook Group is Treat Your Healthcare Like a Business.

I am absent until Tuesday night.  I am seeing doctors and getting MRI's like I have done for the last 15 years.

I am blogging since 2009.  Healthcare and Cancer Survivorship may not be what you think....please read beginning posts as too. 

Lots of info still relevant today!   Thanks and see you Tuesday!

Thursday, February 2, 2017

Cancer Survivor....Cruz, Sanders Healthcare Debate Feb 7th...My Thoughts Pre Debate

Dear Senators Sanders and Cruz,

I have some questions and comments........

1.  Why are you having this debate?  It is not to educate or empower?  I think again we are being manipulated to be angry and adversarial.  I am so very tired of all the theatrical antics.  Enough is enough....don't ya think?

I stand with the entire United States in wanting decent healthcare....I stand with those against and pro abortion.....I stand with those pro and against guns....I stand with people of all parties, races, religions, colors, sexual orientation.....did I forget anyone?   This is the one issue that the entire nation needs to be united.  But you know that right?    You all know it.....that is the real reason for this so called debate.....if you screw healthcare up....the entire Nation will empty out into the streets.  This issue....Healthcare in this Country is the one issue that binds all of us together...and you finally know this.....This took 50 years to happen.  Don't screw it up.

2.  Lets first recognize your excellent Health Insurance plan...not part of any of these negotiations and your full pension that you receive until the day you die......

3.  Lets recognize that neither of you mention the campaign donations and health insurance lobby that really runs our lives as everyday people and neither of you will discuss this.  I dare you.

4.  Lets also recognize the facts that you will not discuss.......that health insurance coding dictates our treatments and lack of life saving medical care and drugs.....often at odds with our doctors.

5.  Why is fraud never discussed openly and ways to get rid of it......fraud is rampant in our healthcare systems.

I have cancer almost a third of my life...over 15 years.....you all seek to be adversarial and are using no real problem solving skills to get the job done. 

Where are all of the CEO's of the Health Insurance Companies?  Why don't you admit that for the last 50 years you all have been their puppets.

Show some balls Speaker Ryan.......Senator Sanders, and Senator Cruz.  You are all exhausting us ....I am sick of working the system for myself and others.....People are broke.....they choose medication over food ......loose their homes......we are angry, tired and many have died or dying.  

I dare you to have me debate the 2 of you.....

Wednesday, February 1, 2017

Cancer Survivor....Medical Insurance Premiums and Medical Bills....Making a Phone Call

Medical Insurance premiums have skyrocketed....I saw a post on Facebook where a person stated that it is like having another mortgage.  It is actually way more.  You pay the premium and then there is the deductible.  You also have to make sure that you stay in network or else your bills will be astronomical.

Some of the best doctors are charging a new yearly administrative fee to make up for the little money insurance pays them....and rightly so.  My surgeon was paid about $2,500 dollars for standing over my body for 9 hours and saving my life.....that is not OK...he should be paid more....like some doctors.....nurses.....teachers...police, and fire folks...they should be paid more.  I do not understand...or maybe I do...:)

Lets not forget the drugs ...the drugs that people actually need to stay alive....a fortune...not going there on this post.

The power of the health insurance company to insure the least expensive way to treat you until you die...rather than do what might keep you alive....often at odds with the medical professionals that want to treat you really well.   It is a daily battle for us .....cancer survivors with continued illness.

So here are some tips to figure stuff out ...........I know I should I write a book on this .....right now I am trying to figure out my future astronomical dental bill.....that is also an issue....the dental lobby is big as well....one of the largest lobbies in Congress.

1.  Learn a little about medical coding.....that is how your bill is determined.  Sometimes a diagnostic code is less money that a preventative code.  ASK

2.  I have learned as in everything that sometimes you call your health insurance company and that person has no clue what they are talking about....call twice or ask for a supervisor to verify.

3. Hopefully the phone call is recorded...write down everything and keep a log...date, time, person's name and badge number.

4.  Don't scream or be rude......just be firm, calm, and act like you know your stuff even if you do not.  I actually am quite friendly when I call these places.   And I tell the truth always. It might go like this.......

Hello....I am________.I have cancer for 15 years....I am very knowledgeable...however I really need your help today...this is my issue...oh by the way, I am taking notes and if necessary please refer me to a supervisor.   Before we get started do you have a corporate fax line just in case you are not able to help me?   I am very detailed and may need medical coding assistance......

I then lighten things up and say....I hope that you are having a good day...please call me Amy :)  More on this tomorrow....