Wednesday, September 26, 2012

No "Whys"

If you really want life to go on in a great way...no "whys"...no "whys".....just how...just how...that is all for today :)....just for today :).

Tuesday, September 25, 2012

I Still Think of You

I have not seen you in a long, long time...but I still think of you.  I still dream of you.  I know you are gone and life goes on and I get all of that...and my life is going on quite well...but I still dream of you...I can see you in so many ways. I can feel you.

I am not sure about that whole closure thing...I just think time passes and things naturally have a way of changing...

But then a moment creeps in...a song...a sound....a memory...and you come flooding back into my heart and mind...

And then it all just goes away....and life just goes on...people are never replaced..just different people come along and you become a little bit different a person...

I hope you can see everything that is going on.

90 days comes just too often...

Those of you reading for a long time know that I get almost a full body MRI every three months.  And that time is already coming...3rd week in October.  I have a lot to do in the next three weeks :)...Isn't it weird how some of us live life in 90 day intervals.

We do not stop living or stop doing things that we would normally do....we just think ...what if...what if life stops yet again for a couple of months....remember that I have been doing this for many years...

So now I am structuring my business where if things stop for a little bit that everything else keeps going.  I wish I thought of this earlier....I just hope and pray that I have no interruptions this time around.  I have so much to do....and I am so excited about doing it all.

My E Book and hard cover book will be coming out a little after the first of the month.  If you want to order it I will give info in an up coming post.  It is all about patient advocacy and some fun stories.

Happy Tuesday!  We Keep Going....with gusto, love, and big life!




Friday, September 21, 2012

Off Blog Until Tuesday ....at a Conference!

I should be back here on Tuesday!  Please read all 300 posts!  :)

Sunday, September 16, 2012

Survivorship Programs and Why a Free Yoga Class is Not Enough!

Happy Sunday everyone.  There are a lot of fabulous folks out there offering so much free stuff to cancer patients.   Examples of this are yoga classes, conga drumming, art, meditation...and I am all for all of this.  All of this helps everyone...the nutrition classes...support groups...I have been to all of these over an 11 year time period.  I even own a drum now..I have had it for 10 years...and I love it...I smash it it often...much to the dismay of my neighbors for sure :).  I did take a few lessons.....

However what is still very, very much lacking is help for cancer patients and other patients when they are really ill....and not...with their incidentals of daily living...this word incidental is not used properly here because it suggests that these are needs that might not be so important...however they could be the most important.

Examples of these chores are paperwork...setting appointments...arranging car rides...meals..calling insurance companies...picking up prescriptions..having a partner at your doctor appt....just giving someone a little company...the list is endless...fighting an insurance company for a second opinion..help paying bills....laundry...cleaning...these services are very much overlooked by everyone.  They are overlooked for many reasons...one of them is that the patient is just too embarrassed to ask for help or they have no one to ask....or think that they have no one...

This is what my e book is all about...I want survivorship programs all over the country to recognize that we are clearly missing a large part of survivorship.....to actually get to the resiliency part....the incidentals of daily living are not incidentals.  They are as important as everything else...if not more so.

So please go to my web site and buy my e book for $10 that is coming out in a couple of weeks.  After you read it please give me your opinion...either here or privately!  Thank You!

http://crowdfundinglive.com/amy

Thursday, September 13, 2012

Goodbye and In Transition

Goodbyes are very difficult.  I hate goodbyes more than cancer...so that must be a lot.  There have been so many goodbyes these many years.  If you work anywhere in the field of cancer you must always know that sometimes you must say goodbye.....not only to cancer patients....maybe to friends ...family..etc ...The list can be pretty endless.  Cancer patients say good bye a lot....sometimes to themselves....way too much to themselves.

Any kind of long term patient has to learn everyday to sometimes reinvent yourself...on the flip of a coin...A friend of mine that I do not speak to anymore...when a big life change or new thought pattern came along...or just when he was hiding...he would always say that he was "In Transition".  We would have a little laugh over that however there was an element of seriousness to his comment.  I knew he meant it....even if he did not think that I did.

The thing is we are always in transition...just sometimes it is more pronounced than others.  Sometimes it feels like a huge fabulous wave just rolling over your body...and you can't stop jumping for joy....and other times it is like getting run over by a huge truck and although you know you will feel better at a later date...that date just can't come fast enough....

And for some folks they might never feel better..physically I mean...and that is the last transition for all of us and the one that most folks just can not deal with...and I understand that.

Sometimes you can actually feel huge transition...it is palpable..it overwhelms the senses...the great kind and the not so great kind...you just have to keep moving to get there....So in the fifth inning I was dealt a big curve ball and I can feel a big transition coming on...in a good way...I hope it is that huge wave that I have been working towards...I think it is. :)




Sunday, September 9, 2012

President Obama #1

I would be writing this no matter who was president.  I am Switzerland in this blog as everyone needs help...even if they do not know it :).  At some point you will spend a lot of money on your healthcare folks....unless you are one of the chosen few that gets to just drop dead at a very old age...in your backyard :).  or as many of my clients have said over the years, "When I get sick, I am just going to shoot myself"...every so often that actually happens...but not nearly as often as we think. :)

Mr President....I know that you are very aware of this problem...but many folks really are not.  I work for a wonderful company for many years.  They have been great to me for many years with stage 4 cancer.  With that being said times have changed for all Americans and if I do not earn a certain amount of money every year with this company...I loose my healthcare.  Cobra then steps in for 18 months..and then I have nothing....nothing....Do you know if you are going through a divorce you get 36 months and not 18...I find that quite funny...not...Cobra also costs over double whatever you were paying ...so while you are sick and need healthcare the most...it now costs over double what you were paying...does this make sense to anyone??

Most people do not know this kind of stuff...you know it if you are sick....and/or someone in your family is sick.  You have to have been receiving Social Security Disability for at least 2 years to get on Medicare...So I ask you my fellow Americans...when an American citizen wakes up one morning without any health insurance because you are too sick to work and you can not get an individual policy anyway because you can not qualify...what do you think is the answer?

Should millions of Americans be without health insurance because this employer based group system sucks...and it is costing people their life savings to stay alive...what is the answer?

Mr President...by now you must have figured out that I am not really writing to you...I am writing to everyone.  I would love to testify before Congress on this subject.  I will be sending this letter to my California Senators and representatives as well.

I have had stage 4 cancer for many years and I am now is remission...that is a miracle...I have had 11 abdominal surgeries, over 25 tumors removed, many body parts gone, many chemos, including intraperitoneal chemo twice...You never know to look at me that I have done all of this.  I run...swim...walk and go back and forth to work...literally...I never liked not working and not making money.  I have been working and having fun most of my life.

I am not sure what the answer is really...this is not working for people at all...I will tell more of my story as I send a letter almost everyday for this month...until someone writes me back..or I get to speak in front of Congress....please no form letters back thanking me...:)

I see from my statistics that my blog is being read all over the world...thanks very much...keep it going..


Saturday, September 8, 2012

Why

Sometimes things make no sense at all....everyone looks for a why...when there is none...or if there is a why.. we are surely not going to find it.  Why is big the world of cancer and other illnesses...why am I here and they are not.  Why did that person leave me.  Why did they stay so long.  Why don't they call...why do they call so much and yet I never see them.  Why!

Why do I have have to have this chemo....why is it taking so long to work...why isn't it working.  Why isn't my hair growing back faster. Will I ever get this port out that is in my chest? (I did...you may too)

Why is my insurance company only paying 60%  of this bill....why are they not paying at all...why don't I have insurance?  Why can't I ever get my own policy ever again?  Why am I getting all of these bills from all of these different places? Who are all of these people sending me all of these bills???  I never remember meeting them.

Why can I get a free yoga class but there is no one in this hospital that can really help me arrange my in home care??

Why can go on forever....Lets throw that why word away and replace it with How do I...When will I...many whys are in the past and it makes no sense to dwell....Let's move forward and get things done the best that we can everyday...everyday....because things don't make sense all of the time.


Standing Up to Cancer

After having cancer a lot of 11 years most of it in the last 6...I felt a bit compelled to watch this show last night.  I knew the music would be fabulous ....I had a big mix of emotions while watching.  Here are my comments and feel free to tell me how you feel.

1.  We are years...and years...and years away from curing cancer...really...hurry up..if you really do the research so much of what they talked about is in it's infancy however I understand the need for hype...so keep doing that so people donate money for research.

2.  I am very conflicted everyday about being a cancer patient for many reasons. I struggle about how much to put myself out there to help others and tell my real story because I want to be viewed as just me...yes I am strong...I am very fortunate to be healthy at this time...you would never know other wise by looking at me...I feel honored...grateful....to be here...however I get very tired of people thinking that I am so fabulous just because I have survived 11 years of this.  I would rather be known for "walking on the moon".  :)

A friend said once it is the way I have survived...not that I have survived...I still would rather have walked on the moon.  :)

3.  I stay in the cancer world as well because I feel compelled to honor all of the folks that I have helped all of these years that are still here and gone.  I want them to know that if you are here....You can do this...if you are gone...I miss you always....this is for you.

4.  I know that I have a particular talent for helping others in this crazy cancer world...especially the folks that struggle for years and have so many life issues...I feel like it is a calling.  So many people run away from folks so struggling...I run to you when I know that I can help.

5.  Long Term Illness can eat away at your soul and that is so much more than the physical aspects...care and money are huge as well.  Arranging your life in long term care is a full time job.  That is where people like me enter the picture.

In standing up for cancer ...remember there is a person out there still struggling...they might need a meal cooked...or a ride to the doctor...or a phone call to an insurance company...or their treatment options explained properly to them...do not run away.

http://www.crowdfundinglive.com/amy

Thursday, September 6, 2012

10,000 Letters

I was on facebook the other day stating how I would love to testify before Congress about healthcare...so I decided starting Monday until election day I am going to send a letter everyday to the President about healthcare and how I feel about it....care to join me????  Think we can get to 10,000 letters?  I do.  I am going to copy it to my Senator as well.

If you send a letter please tell me....I think we all have a lot to say and more people with rare cancers need to say something...so let's start writing.  Write from the heart and the truth about your experience.  Make it real.  Tell friends and family to write as well, I will post my letter here everyday starting Monday.






Monday, September 3, 2012

Bankruptcy and Your Bills

Before I discuss more about negotiating medical bills .....if you know that there is no way to get out of your debt because the medical bills will not stop coming...go talk to a couple of bankruptcy attorneys.  The professional folks will see you for an hour for free....see a couple so you can compare.

If you have never done a home budget inclusive of medical bills now is a good time to do this...especially if you are not going to do a bankruptcy...you need to be able to discuss intelligently with creditors exactly what you can pay monthly in the long and short run.  You would be very surprised to know what companies are willing to do to get paid....you must do the paperwork to understand your options and be able to negotiate. Write down a plan...

Being in financial straits is not a time to be embarrassed or ashamed...many of us have been there...especially in long term illness....

It is the most important time to plan, be honest and make important arrangements. Do not do this alone.

What you need to realize is that once the bankruptcy is filed that you will be responsible for future bills...

I will not say more since I am not an attorney...just  explore all of your options and plan...plan...and plan some more....treat you healthcare like a business.

http://crowdfundinglive.com/amy


Sunday, September 2, 2012

Why Paper Is so Important

As I unpack, organize and plan this weekend...never forget the power of certain things paper...a real picture...a hand written note....especially a hand written note..letter...if you hold that note long enough you can feel that person...you can see them...feel them...It's more real than an e mail will ever be.

So do not forget the power of paper and the hand written note....it allows you to hold "time" in your hands.

Saturday, September 1, 2012

Medicare...Our Conventions...etc

I know I am always supposed to be typing about other things...I am so ADD...This week was the Republican National Convention and of course next are the Democrats....I am a very simple person...here are some thoughts and you can chime in....

1.  It seems like rich people are always concerned with loosing their hard earned money...and why not?  Most of them earned it the honest way...they worked really hard for it.  I do not believe the rich need to pay for the poor...although thank God for Charity....

2.  Unfortunately...many poor people think that they will always be poor and that they should have a bunch of stuff anyway...that is not so true either...again...Thank God for charity.
3. Then ...there are the recently become poor because of our healthcare system and how much everything costs including the cost of long term care.  I remember a client of mine once telling me that his Mom's care was costing about $13,000 per month (she had alzheimers)  and he was now on his third year of paying.  He was running out of money very quickly....her money and his.   This was not luxury care...this was just everyday care.

People on Facebook....etc...are all screaming about one thing or another concerning politics....I believe both parties are wrong in much of their thought processes.  There are so many billion dollar businesses involved with lots of power to sway all the candidates either way.

Without getting too specific in my simple post I believe that there are a few things that we can agree on regardless of political affiliation...

1.  All US citizens deserve decent healthcare without going broke.
2.  All our politicians have given themselves way too many benefits and I would like to see them live with the benefits that the average citizen has.  They have the best pensions and medical care...why do both republicans and democrats deserve that...they do not...
3.  Our senior citizens in need always deserve decent care...those without money and with...it is amazing how one long term care event in a family changes a point of view.  Wiping your Mom's or Dad's rear end really changes your outlook on life :)...even when you can afford a little care...you hate spending the money.

I believe it is time to look way beyond party lines and start to address the real needs of our people....not yelling like idiots at each other...but opening up some real dialogue towards some kind of solution to help everyone...not just the rich or the poor...everyone...