Monday, December 24, 2012

I See You in the Moon

I will get back to business next week however it is the holidays and we think of those from the past and dream of a wonderful future.

As I have said before I look up to the moon and see you.  The moon is something we can all see with those in the present, past and future.

So this evening and every night this week I look up and see you.  I feel you and hear your voice.  I miss you.  In some cases you are in heaven.  For other folks still here I see you where ever you may be and wish you peace, joy, health, and love this holiday season. 

Look up to the moon and see everyone that you have ever known and will know. :)..more to come!


Friday, December 21, 2012

Happy Birthday Girls!

My daughters.  The 22nd is your birthday.  I did it!  I stayed here another year.  You did it!  You are 23 years old and your lives are always just beginning.  Remember that ...everyday is a new beginning. 

I do not want to be cliche here....except that I want all who read this post to know that I have my sanity only because I find something to be grateful about everyday...little things....because the big things in life come and go.  Nothing is ever forever...nothing...no one....

So unless I have that little something everyday to be thankful for...I would go nuts! :)

So I am so very thankful to be here on this day....no matter what we do big/and or small...I love you my girls and big things are coming...as well as little things everyday.  I love you!  That is forever!

Friday, December 14, 2012

Caregivers and Relationships in Illness

This post is dedicated to all Caregivers and God Bless you for your job is so difficult.  I will not get into the statistics of how hard this job is however it is a huge one...especially if you are also a husband, wife, significant other ..lover of the ill person.

Every time I discuss sex, love and or dating in cancer my post goes a bit viral..more than any other..so I hope this post helps many of you out there.

Many of you know that I had a significant relationship during many of my cancer years.  I had the opportunity to revisit that relationship recently.  It was not easy however I welcomed the opportunity to reflect upon it and learn from the other person involved....My way of working through it :) and it was a wonderful get together...I hate it when I learn too much :)

I am not quiet very often however at this breakfast I stayed very quiet...I just listened to the other person's side...everything has two sides...every relationship ...even in cancer.

I learned how often I just forgot to say I love you..thank you...I love you.  I learned about the pain that the other person was experiencing... that he felt he had no one to share that pain with.  I learned about what made him run from me after many years and much of it had not to do with cancer.  I ran a bit from him as well...two sides to everything...even in cancer.

I learned how to forgive and accept an apology as much as I would like to be angry... I can not.  I have nothing to be angry about anymore.  I learned that life IS sometimes about timing and when that time is done you have to have the courage to say good bye to what is lost...because sometimes you can not find it again....even if that is all that you want to do.

Cancer is a very difficult thing to NOT focus on when you are living it everyday...even when you are better...after so many years...it always sits there somewhere in your brain.

It is also so difficult at times to rise above your circumstances when you have not learned how to do that yet...so now we know and the rest of us has melted away?  Are we that different than the people that we used to be?  I guess so....so even in cancer ...you have to do the same things in life as if you were well...move on....make a new life...make peace with the old...xoxoxox

Wednesday, December 12, 2012

I Did It and I am Ready

I did it.  I am sitting here in the hotel getting ready for the big drive and I did it.  I saw both my daughters graduate college.  This is my miracle for today.  I guess my next miracle is seeing them in the most wonderful careers...meeting lovely men and falling in love...maybe even someday being a grandparent....if that is in the cards.

I know whatever is in the cards for me ...good or bad...I am ready.    I am ready to fight...to live...to love...to laugh..and even to cry...I am ready for it all.  Bring it on...

It is a new year ....Let's keep the peace and joy coming...although let's face it...I am a nervous cancer patient....just like you :).  I am so not done!

Sunday, December 9, 2012

On That Road Again

Well....here I go leaving at 3:30 in the am...on another one of my crazy road trips.  I am thankful to my daughter who went far away to college so I can take these insane drives.

With that being said how lucky I am ..how very lucky for me that I can do this and do it well...

How lucky I am that I still get to put memories in the book for us to look at hopefully together years from now.

How lucky I am that I get to visit with new and old friends.  How lucky I am to just be here...smiling, laughing ..and wishing that I had remembered to buy a pair of gloves ..:)...I forgot...It is Winter :)!


Sunday, December 2, 2012

Looking For Life....

I will not be posting much this month...I am working very hard....watching my daughter graduate college :)...doing a bit of traveling...and seeing some old and new friends...

I also have a case that I am working on as an advocate and it needs much of my attention...

I will check in next week....wishing you all health, peace, and fun!


Friday, November 30, 2012

Thanks For This Particular December!

I am so thankful and grateful for this December!  This is the first December in 5 years that I am not recovering from something!....Either chemo or surgery!  THANK YOU!

It's my kids birthdays...23...:)...work is going well...and I am at peace...and crazy thinking about the possibilities of the future :)!

To all of you out there this holiday season when things may not look so good....there is hope ...11 abdominal surgeries....4 chemos...etc etc etc...keep going...


Wednesday, November 28, 2012

Lets Keep Medicare Strong for Our Elderly and Disabled!

I must tell you I believe in Medicare for our seniors!  However fraud is costing us billions of dollars.. to the point where the age for eligibility could be raised to as much as 70 years old!

So please take moment to write your government reps and let them know to make it a priority to clean up the fraud in medicare and let us take care of our seniors and our disabled!  It does not have to be like this!




Monday, November 26, 2012

Cancer and Dating

This post is dedicated to my friend in the fight who asked me to write about this subject...so here I go.

This is a huge and complicated subject...I am single...I was not for a long time however I am now.  Blunt is the best way to be in this conversation. 

In general I think you have to be very thick skinned in dating with cancer. Dating is crazy enough however with cancer the rejection is bigger...so you have to be prepared to meet someone that you may like...they find out that you have cancer and they will run...as fast as they can.  However you are still you and you may not like the person you go out with...it is the same game ...it just seems bigger...:).

Frankly what are your goals in dating...seriously...are you looking to fall in love...just be in like and have sex...or just have some free dinners?  I had a friend many years ago that has since passed away...however she was quite up front about just wanting to have sex before she passed away...and she did ...lots...she met a man ....they became friends and until a few weeks before she died, she was really enjoying herself.  So I think in dating we may want to think about our level of involvement and what ever you can emotionally and physically handle is good.

And what your issues are with your body...I have a prior post on sex and cancer...take a look at it.

When do you tell someone that you have cancer...the minute you meet?  On the date?  No joking here...Many years ago...maybe 2002 I actually had a man google me and break our date because of cancer....there is no privacy today...none..I am so glad he did that ..the date would have been horrible.

I have been very fortunate in my battle with cancer.  I have one huge line that goes down the front of my body...and a couple of little scars...I look totally normal...I run ..work out...you would never know to look at me what I have been through.  I am thankful for this everyday.  However there are people with cancer where their bodies are totally changed forever and I think that brings quite bit more into the picture.  I can not speak to that as I have not experienced it.

I would say that some of this must be left up to God and fate...not all of us are going to meet someone again and fall in love...so we must learn to love ourselves and carry on without that significant other....and we can and do very well at that.

I must tell you that I fell very much on love right on the middle of cancer...he was much younger than me and we had a blast.  We were together for 7 years.  And one day he just left me..it was a mixture of many things however cancer was one of them...so we just move forward everyday...and date...be adventurous...take chances...enjoy...you never know who will come along...however unless you do it..you will never know :)

I am dating again...I am in remission however something could pop up at any minute.  I know that..and anyone who meets me has to deal with this issue in my life...it will always be there...so I am leaving it up to fate and God...if I meet someone...great...if not...that is OK too...I think dating can be over rated and we just have to have the best lives that we can with or without someone....hard to accept but we must!   I hope this is helpful to you my friend!  Be open and you never know!










More Underwriting Information

Lastly I just want to add (read prior post) ...that are many issues involved with underwriting..for example..

You had breast cancer over two years ago with no lingering issues...no neuropathy ...etc...no medical issues what so ever...you may qualify for long term care insurance...however you may have to wait up to 5 years for life insurance...

As far as individual health insurance it may be impossible to get anything....for 5 years...

As I say always the best thing to do is to sit down with a very experienced agent and never move forward at the first meeting...do your homework...ask lots of questions!

Medical Underwriting for Insurance Purposes

I am interrupting the flow due to a request from a long time reader that sent me a host of questions that I can only answer here.

You know in applying for any insurance that you must go through underwriting. This is when the insurance company requests your medical records for as much as five years back to see if you can qualify for the insurance that you are applying for.  This could be health, life, disability, and/ or long term care insurance.

The underwriting is different for all of them and it depends on the company regarding how strict their guidelines are for qualifying for the insurance. Here are some tips to possibly ease this process.

1.  If you do not need that medication...Do Not Take the Prescription!!!   Prescription Drugs can ruin the underwriting process!  I have seen so many doctors just write a prescription just in case you need it...Example....for pain...vicoden...etc...this one drug can deny you any insurance!  Be careful the drugs that you casually accept and take only once a month...do over the counter as long as possible.....it will save your records!  Some docs give out drugs like candy...

2.  Have an intelligent conversation with your medical professionals regarding the wording in your medical records....these records follow you forever.... and ever...

3.  There are different types of underwriting...some insurances underwrite for death (Life Ins)...some for disability (long term care/disability)...talk to a professional about the guidelines ...you never know...

I have insured many people over the years that are survivors...they just have to fit the guidelines from the insurance company which I will generally discuss in the next post.  If you are currently ill there is nothing that you can qualify for. 






Sunday, November 25, 2012

Preparing to See the Doctor ...the Day Before

This is the day before you officially become a cancer patient...you may have just had a surgery, a scan, or a bi bopsy (like in my Big Fat Greek Wedding..the movie...one of the best lines)....a biopsy....and you do not know a thing...until tomorrow...

How do you prepare for that appointment?  In reality this is the appointment that you can not emotionally prepare for however ...you can still do a lot....

I will never forget my first "cancer appointment".  My OB/GYN was a mess and my surgeon/oncologist was a mess as well...he had just come down as a teacher to my OB/GYN because my one tumor was in such a crazy place...she wanted a bit of support...no one ever thought that this would be leiomyosarcoma...so rare.

She had a tear in her eye and his head was down..After they told me the news,  I established my routine that would follow me unknowingly for years to come...I would hear bad news and then leave the room to collect my thoughts and emotions and come back the next day.  I thought I would have this one tumor removed and go on my merry way....little did I know that the fun was just beginning!

To prepare...do not go alone...have someone to share wonderful news with and the same goes for bad news..have someone with you that you can count on to be level headed and not say stupid things.

Bring a pad and paper...you may have a million questions after the doctor speaks and you will remember none of those answers due to emotional stress. 

Many cancer centers today give tours on the day of your first appointment...just like a hotel :)....(a little humor...it is necessary)..go on the tour...you will learn a lot about how things work there .  Every Cancer Center is different.  More tomorrow about your first appointment.

How To Organize Your Healthcare

There are 419 posts here.  That seems a little crazy!  I never knew how long that I would actually get to do this...or how much that I would actually have to say....a lot...cancer provides you with a lot to say.  And many folks that e mail me privately make me keep going :).

So as of today I am changing the structure of this blog...My e book keeps getting longer as I have organizational issues..for the next 90 days this blog is all about organizing your healthcare...It is a new year.

Next post is ...."Treating Your Healthcare Like Business 1"...and so on....Come read and learn a tip everyday about something having to do with practical tips on how to get the most out of your journey through cancer or whatever illness you have....

I have posted a lot about this in the past ..just not very organized...now it will be....if you have a question please ask here ...most of the comments I receive are deleted due to someone trying to sell something here .....no salespeople here please...go get your own blog...:)

If you like what I am posting please send it to someone.....it may help them.

Let's start the new year organized and ready to fight :) for your health....in all kinds of ways :)

Saturday, November 24, 2012

Survivor Guilt and Post Traumatic Stress Disorder



  There are 3 components to illness...number one are the physical issues of being sick.   Number two is learning how to deal with the outside world in a new way and number three is learning how to deal with your self mentally as well.

Many long time survivors suffer from PTSD and survivor guilt.  I must admit to not ever feeling guilty about being here however PTSD...I have experienced...

Regarding guilt......

    Instead of feeling guilty about being here I just made my mind up to be grateful...and being here on earth is a lot of work.  I believe in God and if I am here I guess whatever I am supposed to be doing here is not done yet.  So I have no guilt about being here.  I just work hard to have life in order the best that I can.  Try it...granted this is a no nonsense approach...I am a no nonsense person.   I have empathy and sympathy for everyone however there comes a time when we all just have to "do it"...even in illness. 

Regarding PTSD

   My humble opinion is that this is much bigger than guilt over being alive.  Being a soldier in battle is much more difficult however we are soldiers as well in battling cancer.  I have vivid memories of so many happenings in my medical world..Maybe you need professional counseling.  I believe in that.

I can still feel so many things as if they were still happening.  My memories are sharp and intense if I let them be.  My way of dealing with this is simple...I let the memory in and then I replace it with a wonderful one in the exact place where I was..even if it was in the hospital...for me it works...you might want to try it...

For example...11 years ago I was in the hospital on Thanksgiving..my lung collapsed due to a chest port being inserted.  I had the lung tube...a chest port for chemo and a stomach port as well.  It was the very beginning of this crazy journey...during this time a volunteer in the hospital took me up to an employee patio on the top floor and we looked at Christmas lights together...it was like breaking out of jail ..outside breathing in the fresh air...totally against the rules..:)...I have done lots of stuff like this...:)

So I choose to remember that...and not dwell on the ugly stuff....remember the good stuff in illness...it is there...I know.


Friday, November 23, 2012

Out On the Ledge

It's the Holidays...this is for all of those folks that may not be in the best mood.  If you are reading this blog it is because you have some kind of relationship with Cancer and or illness....and you may need some help.  Keep reading.  I write and help people all of these 11 years because it helps me cope as well.  Thinking about you and not me... makes me feel better...because I am not thinking about myself...and I enjoy helping.  It makes me feel better....so here are some hints to feeling better if you are out on the ledge...

If you are feeling really ill mentally...seek the help of a professional. If you are just sitting looking out and your feet are dangling...it is time to change the way you think...even in illness. 

1.  If the holidays are bothering you ...do something different...could be something little or something big...what is on your bucket list..grab someone and go do it. 

2.  Laugh...a lot...go somewhere where you will laugh and get away from those folks that bring you down...you laughing will influence those around you to laugh as well...

3.  Get out of your head...this may sound crazy however a lot of cancer patients think it is all about them...I can say this because I am a cancer patient as much as I hate to say this. And when the focus if off of the patient things get much more relaxed...The focus can be on you ...but you have to let it go when you can and just live...forget cancer when you can and move forward.....if you are physically able keep moving forward...with you first and cancer second....you are still you ...

4.  Your body is not the enemy....I have talked about this before...In illness there is a huge disconnect between your mind and body...You want your body to be well and it is not cooperating....go do great things for your body if you are able....get a massage..a facial...be touched in a positive way...any way that you can...even if it is someone just holding your hand.

5.  Tell important people that you love them...tell them...it is a reminder of how deeply you still feel about them...have them feel those feelings as well...I believe telling people how you really feel makes them better as well...do not miss special moments.

6. Get organized...those papers piled up on your desk...you will feel better if your paper life is in order...get someone to help you.

Sitting on the ledge is just fine....as long as you need it...go back and forth...come in every so often and keep moving forward....enjoy the view, breathe deeply, and bask in the sun :).

Wednesday, November 21, 2012

Thanksgiving Day

I have had 11 abdominal surgeries....and so many etc's...so this is what I am thankful for this year in particular... since 2001...

I am thankful that I can eat...anything that I want.
I am thankful that my body is still my temple...although sometimes I feel like I need an oil change :)
I am thankful that I still have lots of head on my hair and eyelashes as well...
I am thankful that I have enough energy to keep up with most everyone.
I am thankful that I can still see the future...with me actually in it...I hope this part continues for the rest of the year...and 2013..

The future...with me in it...

Happy Healthy Thanksgiving to one and all....a little peace and good health...and laughter :)


Make Believe

I was told once a long, long time ago by a very successful business person...that I should "fake it" until I make it...in the most truthful way...just make believe that I am already successful and I will be....I believe this...

I have been doing it in my personal life for a very long time....and it works for me...

In times when I am sad...I make believe that I am happy...

In times when I am lonely...I think about all of the fabulous people around me.

In times when I have been ill...I close my eyes and imagine myself...walking, running, or dancing and I have always felt better...

So if you are one of those people this holiday season having any bad feelings about anything...the longer you can really make believe and take action with your belief....things may just change...and more quickly than you think...God Bless and Happy Holidays!

Tuesday, November 20, 2012

What You Can Do for Yourself this Week

It is the end of the year ....remember if you have a deductible on your health insurance and it is satisfied...this may be the time to do those medical things that you are now 100% covered for....

If you do not understand how your deductible works and how you are covered review this with someone....so that you get the best value from your plan!

On January 1st everything starts all over again!

Sunday, November 18, 2012

A Very Important Point About Medicare

Those of you picking medicare for the very first time.....REMEMBER....if you choose an Advantage Plan...you are stuck with it...

If you then decide to go off the Advantage Plan at a later date and decide that you want to go the supplement route...you will  have to go through underwriting to be approved. Understand this.

Advantage Plans are HMO style....the supplements are more PPO or POS style.  With supplements you have more freedom however it is much more expensive.

With Advantage Plans they are HMO...much cheaper and you need permission to do many things if you become ill.

Discuss this with a professional...not someone on the phone and choose wisely.

Of course with Obama Care coming things may change...for now ...this is the way it works.  Open enrollment ends on Dec 7th.

Saturday, November 17, 2012

Moonstruck and Movin On

Have you seen the movie "Moonstruck" with Cher and Nicolas Cage?  I love this movie...there is a part in it where she slaps him and says "Snap Out of It!!!!"...ok...I am done...had my bit of memories and now I am done for the week...:)

As much as so many people seem to say...."the past is just that..the past"...and it really is...we still take our past with us where ever we go...and it is how we place it that counts...

Are we using the past to propel us forward or using it to stay stuck in the mud?  I allow myself those "stuck" moments only because I know that I will snap out of it and move on...can you do that even in cancer?  You can...however you can work it...you have to....

You have to... because you are still here and possibly you have this huge life waiting for you ...and unless you continue to move forward...you will not see it...feel it...or touch it.....or embrace it...

So you must embrace it before it even happens....my friends that are ill this season....this is the first time in 4 years that I have not had a surgery during this time...and I am so healthy it is scary...just plain scary at the thought of having this huge life...

And always scary that cancer may take it away....so in spite of having something that  may be taken away in a day...we ...you me...all must live.. everyday...I know you get it...I think just like you all of the time...I just do not write about it very often...

This blog has been on the Sarcoma Alliance for years.  The Sarcoma Alliance makes sure that Sarcoma patients have money for 2nd opinions that can save their lives by seeing the proper doctor.....looking to donate and save a life?  This might be it ....Lots of love my friends..

Friday, November 16, 2012

Thanksgiving 2012 and the Moon

The Holidays are coming...the time of year when people either feel very grateful, peaceful, joyous....angry...and or hateful...or sometimes all of the above...I am honest...I feel all of it...I am human and can not feel grateful all the time :).  I do try.

We seem to reflect these months more than others.  We miss certain people more because we are reflecting on the past and planning for the future.  I believe with cancer patients and other people with disease...these feelings good or bad are magnified a few times over.

So for some reason today I started reflecting and remembering...I am going to cut this out shortly :)...Maybe it is because the Hostess company closed and I was thinking of those Twinkie memories :).

I have had leiomyosarcoma since 2001.  I started thinking of all the LMS people that I have met over all of these years.....and all the general cancer people...that have helped me and that I have helped.  I am seem to want to honor those folks long gone and I miss so many people that filled my life in such a wonderful way.  Cancer sucks...plain and simple...it just sucks....but I am still grateful..most of the time.

I also miss my family this time of year...My Mom...Dad...my kids' Dad...I will always miss them and how they filled my house with joy.  I miss my dog ...my big white, shaggy crazy dog...we called her Mini Moo....her name was Maggie...I still look at her picture and I cry...not too often...:)

I miss my house.  I had to sell it due to being ill for so long...I miss my bathroom and the skylight in it while I took a shower...I miss my windows where I could see the mountains.  I miss my front porch where I would have coffee with the hummingbirds. I miss space...peace..and no traffic noise...I miss many of the people that used to be in it.

And I walk miles...especially when the moon is out.  I look up and I feel like all of the people that I love are looking at it as well...whether you are on this earth or up in heaven.  I get to be with you while we all look at the moon...together..is half?  Full?  Quarter?  It is the most beautiful Moon.

I wish you all whether patient, caregiver, family or friend the best holiday season possible....filled with love and peace.  I look forward to the future always...I plan ...I love...and I live...I hope you do as well as best that you can!


Thursday, November 15, 2012

Thank You

I just need to say this....thank you to my friends...my real friends that remind me everyday ....even when I just want to scream....that I am going to be ok in mind, spirit, and physically as well.

To those friends that never ran away from me in my worst physical and mental states...thank you.  I do not know what I would have done without you.  You saved me at a couple of very dark moments.

I am so happy that you stayed with me to watch me come back...and then some.  We are going to have some fun..:)

To those that ran the other way and never came back....I get it somewhat...but not...I do not run from people...ever....I stick it out...I learn...I do not run...if I leave I say good bye and I explain why I am leaving.  And if I do not come back....they understand...or not :)

I also know that some people are here for a time and then they are gone....and that is just life....and new folks may pop in and out...quickly...

Cancer just makes everything a bit more sensitive for so many reasons...That is another post..

So all of us...let's be aware of how we deal with the sensitivity of cancer in our lives...in running away you learn nothing about yourself...you just run...and the negative feelings magnify or get so forced down into your soul that it effects everything in your life....you always have to let the feelings out...to get better..






Monday, November 12, 2012

What Is In This Blog

I am heading towards 16,000 views.  It seems like everyone still likes the emotional posts best.  "When I Had No Hair" has over 325 views.  "Multiple Personality Disorder and Time"  has almost as many as well.

"Tips On Health Insurance" is catching up.  No surprise there.  Many folks I know lately with Sarcoma are really struggling and often I do not know what to say.  So I guess my own craziness from time to time in my blog hopefully helps.  I will try to post about my craziness as much as possible :)  ...And about the normalcy of my own life as well...even in the craziness......



Saturday, November 10, 2012

Jill...and Why Cancer Can Be So Random

Jill...this post is dedicated to you.  I love you and you are gone...in peace finally after so much struggle...non stop struggle for years and how much can one person deal with??!!  You did...you dealt with it all with grace, power, strength, spirit...always fighting...until you just could not anymore.  Cancer never gave you a break really.  You did the best that you could...the monster was too strong this time.

Jill did everything...diets...surgeries, chemos...on and on and on...she had the best doctors...and did everything right....I can not ask why anymore...I only must think that when it is your time to go...it is your time and there is not much that you can do about it....even the miracles when they happen...I just think they were meant to happen...

I love you Jill and now you are an angel....may you watch over us and keep us safe...and I hope you are hangin with your Dad up there!  Lots of love always. 

Thursday, November 8, 2012

Why Paying Doctors Less Money that Accept Medicare is Just Stupid!

Please write your representative a letter and tell him/her that the first order in business as part of Health Care is to get rid of the fraud in medicare.  If we could do that this program would be fully funded and there would be no issues except how to make medicare better for our seniors.

One of the ways that medicare tries to save money is to pay our doctors less money every year to care for our seniors.  This makes the really good doctors drop medicare all together and our seniors are left to the care of possibly not so fabulous healthcare professionals. 

Many doctors will accept medicare and still charge you as well depending on the plan you have chosen. There are many doctors that stick with medicare out of the goodness of their hearts...look for those.




Why You Should Not Be Afraid of Obamacare

I am not Democrat or Republican...I am an independent.  As a cancer survivor that has had 11 abdominal surgeries...many chemos...etc I know a thing or two about our healthcare system and how it works.  I just want to make a couple of points.  You are are always welcome to tell me how you feel as well as long as you are trying to sell something here as many people seem to want to do...cut it out...

If you read my prior post about why healthcare is so expensive you will know that health insurance companies comprise a big portion of our gross national product.  If that were to disappear into socialized medicine...our economy would surely collapse...even more. No one is going to let that happen including our President.

There will always be private healthcare plans.  They will be for people that can afford them as usual and that can buy them when they are healthy.  There are about 6 health insurance lobbyists for every Congress person....do you think these companies are going anywhere??

Employer based healthcare is one of  the biggest reasons so many middle class people loose their health insurance and go broke.  You are working...then you get sick and you can't work...you loose your insurance.....then you go on cobra...which costs over double than what you were paying when you were working...and you are sick..and you can not pay any of your bills...then your cobra runs out and you have no insurance!!!!!!  This is not ok....this is not American.  This is not the way our country takes care of its people.

We need some form of Obamacare to take care of people when they have no insurance....it's a pretty simple concept....Your private health insurance is not going anywhere....they are too big and too powerful and too important to our economy.

My next post is how ever Obamacare and democrats can do better for our doctors and medicare.


Monday, November 5, 2012

Life and Death....

This post is dedicated to you young woman.  I will miss you.  You are strong and resilient...and cancer never gave you a break for years and yet...

You fought so hard and smiled most of the way through it.  And your life went on in surgery after surgery and chemo.....and you kept smiling and fighting and made your life go on.

And then one day you could not fight anymore because there was nothing left to do....so you went home...and to face the next transition.....the hardest of all because you are so young....and so much of your life has not been lived.

Every time I hear this... part of me just does not get it....why you and not me....why me and not you...as I have have thought about this from time to time.

I have seen by now hundreds of people go....so that is why I keep typing...for those that had to leave and those of us still here..sometimes I do not know what else to do.

So go with God and I hope that I see you again someday....I just adore you.



We Want New Procedures...drugs...etc

If you read the prior post, one of the reasons why healthcare is so expensive is because we want new everything to help as live longer...drugs....procedures...etc.  This is the first reason that I would like to address.  Many of them are intertwined actually so I may discuss a couple of others as well.

What is progress in medical care?  This is very complicated as we all want to live longer almost any way possible.  As a cancer patient we want to buy as much time as possible....even when we know our time is running out.  All of this has a huge impact upon our healthcare system.

Our doctors and patients are walking a fine line between giving patients quality of life and knowing when it is really time to stop treatment and leaving this earth in peace....that line becomes crazier everyday.  Sometimes there is no right answer.

This is so because we never know what miracle will happen and that person stays here a long, long, time with a good quality if life...however needing so much care.  I have also found through over 11 surgeries in 11 years...that you never know what is in there until you actually go in....and here I sit totally normal and enjoying my life.  You can look at me and never know what I have been through.  Each case is different.  As we find more and more medical procedures to do to ourselves....there is no rule book.  it becomes vague.

And here is the mess.....what do insurance companies pay for and what not....what happens when new medical procedures and drugs that can save a person's life has not made it through the maze and  not supported by the insurance companies....those people are just left to pass away before their time?

No easy answers...none at all.



Thursday, November 1, 2012

7 Reasons Why Healthcare is so Expensive

These reasons that I will post are not my reasons however I will give my opinion on each one in future posts.  They are from the PBS Newshour  as reported by Julie Appleby.  They are from a Washington Think Tank.  They are quite telling for our future.

We spend more on healthcare than any other country in the world..in the world.  Here are some issues that need review and nothing about this is easy as it involves in some cases life and death.

1.  We are getting older, sicker, and fatter...therefore we spend more on everything.

2. We want new drugs, technologies,services, and procedures....no surprise there..trying to stay alive as best we can and as long as we can.

3. We do not have enough information to make good decisions on which healthcare is best for us....also no surprise here...everything gets more complicated everyday..

4.  Our hospitals and other providers are increasingly getting more of the market share and able to demand  higher prices...this is not even including the cost of long term care services.

5.  Supply and demand problems, legal issues, that complicate efforts to slow spending.

6.  We pay our doctors, hospitals, and other medical providers more for not being efficient.

7.  We get tax breaks in some cases as an employer for providing health insurance to workers....please do not get me started on this one...well later..:)

You can google this full article and see how this battle for good health care in America is more than difficult...more on the reasons tomorrow.


You

I do not go to therapy.  I have in the past however I feel pretty good these days.  However I know that I have done much of my therapy here with you all..over 15,000 of you.  So today I am very angry at someone and I have to work it out...so I am going to do it here with you.

I am not sure what just happened here.  I am very angry at you.  I think this is God's way of yet again telling me to take care of myself and not give a crap about you.  I should have listened.  I was doing so well and I still am however I did not need all of those emotions and hopes of resolving some much needed stuff in my life to come back up and haunt me yet again.  And I let it.  And I own that.

I must realize that not ever resolving an issue is ok as well.....it may just never resolve and I just have to live with it...not just live with it but really process it and know that it is gone.  I have to release it to the past.  This is a hard thing to do.  It takes practice and work...and love of yourself and respect of your precious time.

So here yet again I have to let you really go.  This means me growing up even more...and here I thought for a moment that I was at a peak...only to walk back down into the valley and come back up to a new and higher ledge.  So here I am....and here I go.

Only up...while you are so stuck.  Always stuck in a sea of dysfunction.  Do not stay there. I hope this for you....that you do not stay there. 

Monday, October 29, 2012

Acknowledgement of Stuff

I am a little hard headed.  I know it....It took me awhile to learn to acknowledge certain aspects of my personality and life in cancer and otherwise.  If you can acknowledge certain facts and feelings...then you can learn to accept.  Acceptance is the gateway to change...if you have long term any disease you have to adapt and change....to grow....and see life in a different way.....and then you might feel better.

Sunday, October 28, 2012

Anger In Illness and Life

A friend of mine was talking about anger today so I though that I would put my 2 cents in here concerning just anger in illness/cancer...I will talk about medicare, etc later..this is more thoughtful for a Sunday while I am sipping coffee...

Are you pissed off because you have cancer or whatever?  Of course you are...may be you will not admit it however I know that you are.  Are you pissed off from time to time as a caregiver?  I know you are there as well...even if you will not tell anyone...doing this for over 11 years...can't hide from me...I have been there from time to time...I have been both a patient and a caregiver to my parents and sat with many other cancer patients over the years.

There is so much to be angry about.  Anger in your care...anger at family/friends who are not responding to you the way you would like them to respond....they do not know what to do...they run and hide from you..

I could go on forever however I do not like writing long post so let's deal with the big one...anger at yourself.  You are angry for getting sick in the first place..angry at your body for not working properly...angry when you see money melting away ...angry ...angry...angry...and in anger is just plain being scared...for your loved ones..yourself...and your life as you fight to keep it...

So what to do with all of this anger and fear?  That is the next post...but acknowledgement is the first step.  It's the first step to building a life in cancer...in survivorship and resiliency.


The Presidential Election

Now it is back to business now that scans are over.  Who are you voting for?  No..please do not tell me.  Really who ever wins I will still have to sit outside the White House with my sign.  I have bought a really comfortable chair...maybe I should line it with fake fur and get some water proof stuff in case it rains.  I want to be warm :)...as I could be sitting there forever....and ever....:)...and ever...

I could be sitting there forever because who ever is the next president ...has their hands full when it comes to healthcare.  We as Americans should be protected with insurance....it is a basic right not privilege to have healthcare in America.  The question is how do we do that???  Everyone has very different ideas about that.

The destruction of our healthcare system, much like the national debt did not happen over night.  There is a history of greed and mismanagement over many years.

So what can we the average person do about this?


Friday, October 26, 2012

Wow and Yay!

I had stable scans today...this for sure is a miracle....for me...I have had no chemo...no drugs of any kind..my last surgery was one year ago.  This is the first time in 4 years that I have not had a surgery in a whole year.  I really do not know why....and I do not care.  I am so grateful, humble and happy...

I had one great cry after I was told this news...then I laughed...then I sat in silence for awhile.  Then I called my kids...then everyone else...I am taking a deep breathe and now seriously planning the next 3 months...until I do it all again.

Happy Holidays...Happy New year...Thank You God and whoever else is involved in keeping me healthy and allowing me to continue down this crazy road and really get this new life up and running.  I can feel it coming...a year ago I thought I may have been done.  To all of those struggling...there is always hope and you never know when it is really over...if you can you keep fighting as long as you can.

Things Need to Gel..Not just Fit

I was talking to a very old friend yesterday and this is off topic however every so often I know that he reads here.   We are talking about our lives and how they are going.  He stated that something just fit...so he moved forward.

I thought about it for awhile.  Things are not supposed to just "fit"...they are made to Gel...like when you meet someone...your lives should eventually just be "all over each others lives"...and it should be most of the time easy and comfortable.

They should be like colors mixing together to make a new color. That is how I think it should be.  Nothing should ever just "fit"...

Back on topic tomorrow. :)  We should all look for Gel in our lives.

Sunday, October 21, 2012

The Real Horror Of Cancer

I have been typing here for a long time..over 400 posts and over 15,000 views...I know not much compared to other sights ...that will change soon...but tonight is just for cancer patients of which I am one.  I hate passionately saying that. I am a cancer patient for 11 years and I get a little nuts at scan time...it becomes hard for me to focus on certain things ...like the future :)...which I normally do so well.

Last night I could have gone out to dinner with 60 new friends...I am so not shy...stick me in a room and I will know everyone by the end of the night...however this time of year I prefer the company of people that know my history....a safe place....just in case...things do not go my way this week.  I went out with old friends where I did not have to explain anything....because fortunately I do not look like or act like my medical history at all.

I have dreams.....dreams of all kinds of career stuff...may be even falling in love one day again...ok...maybe not that ...lol....but maybe ...but not...and that is ok...but maybe...

The real horror of years of cancer is not the actual physical pain ...of which I have had little compared to others I know...it is the emotional/ mental pain that you cause others and yourself...mostly others..like your children, family and friends.  I do not want to give the loves in my life any bad news anymore...at all....Even people I might meet in the future.   In the past there has been enough.

I mentally prepare for the worst ...just in case...believe it or not either way it is a shock....after these every 3 month meetings...I just sit and replay it in my brain for awhile...and then I start to make plans :)...it takes me about an hour to scream with joy in the car while driving...and go for a long hard walk afterwards...then I call people.   And then I realize I will do the same thing 3 months later for the rest of my life...how many MRI's is that in the long run...I guess hundreds :)...maybe thousands :)...one can hope :)...I will never give up.

Come on researchers ...hurry!












Thursday, October 18, 2012

Medicare...step 1

You are researching Medicare.  You are either 65...above....or disabled over 2 years and on Social Security disability.  This post will not recommend any particular plan...it is just a guideline to help you review.  See a professional to help you.  Go to those seminars for information.  Do not sign up after hearing something that sounds good the first time.  Go home and research.

Now you are looking at plans.  They are many choices...which company...then do you pick HMO, POS, PPO and the list goes on.  Companies and plans.

Set aside an hour or more to start reading.  Same at home...if this is too much for you to read at this time...get a family member, friend...someone who understands this info and have he or she sit with you and talk it out.  It is all very confusing...for everyone.  Do not feel bad if it is too much to take in.  There is nothing simple about our medical coverage anymore.  Who ever let this system become so complicated should be forced to use it :)...I am sure they do not....;)  They must be in Congress retiring on full pension for life and 100% covered with their plan. Tomorrow ..or later today...the basics on how to research a plan and company.

Wednesday, October 17, 2012

Medicare Renewal Time

This is the time of year when you can change your medicare options....the next few posts starting tomorrow will give some ideas on that subject....it is often confusing ...especially going through cancer and wondering if there is anything that you should be changing in your care.

So tune in tomorrow morning for some more healthcare tips....Start reading or go to a medicare insurance professional!  Sit with someone that is willing to explain things....everything to you...if they are in a hurry...walk away...

Write your questions down in advance!  Bring a pen and paper to take notes.  Bring a friend or advocate with you who understands the "talk".

Tuesday, October 16, 2012

How Far Away Can I Run?

I love to travel...however now I would just like to run away and do everything I can before October 25th...this is called scanxiety or fear of your life not moving forward as the oncologist enters the room....after your scans....how fast and how far can I run???

I have been doing this over 11 years so I have been on both the good and bad side of the bar....the feelings do not change as time moves forward.....I so badly want to continue my normal life....even though I have no norm lately...

So I really can not type right now...I am too crazy over these scans...I am busy praying...laughing...and running as far away from those appointments next week as I can get....in every way!

I want these next three months to be mine and not cancer...I am very busy cancer...go away....

Saturday, October 13, 2012

Curing Cancer

There is a very interesting article in this weeks Newsweek about curing cancer and how far away we are from really doing that.  You might want to read it.  Dated Oct1st & 8th. We have much work to do.  The real statistics as follows...

1 in 2 men will develop cancer
1 in 3 women will develop cancer
1 in 4 will die from cancer

Defense spending in the US is $144 Billion
Cancer budget is 5 Billion...

When you donate your money be sure your money is going to the right place. A rated charity?  Do your research.

Cancer comes from the genes and what trips that gene at that moment to start growing abnormal cells...that is the real cure...this research is in its infancy...When I read these articles I realize how much work that we have to do....let's do it.




Friday, October 12, 2012

New York..Life and Scans!

Hi Everyone...There has been much going on ...where to start....This has been a long time of emotional recovery for me and I am doing great...I have have had so much change recently in my relationships, my work, I moved...and my scans are in 10 days.  So a little bit of dealing with the past and getting ready to deal with my future...which I hope will not include any medical procedures :).  Many people that I know for years with Sarcoma have either become very ill or passed away...it goes with the territory.  It is heart wrenching to say the least.  I still get enormous satisfaction helping people...I just wish that they could stay here a bit longer...

I went to New York which was amazing...I lived there from 0 to 18...I was able to spend very special time with old friends...I found those moments of joy that I was looking for...the kind where you have to step back...look around and know what you are experiencing at that moment is so deep...I needed a bit of that.

I was able to forget cancer for awhile and go back to a time when life was a bit more simple...I was able to remember a few things about myself that I needed reminding of...old  friends can help with things like that. :)

And I just love Long Island and New York.  I can not wait to go back.  So on the 25th I see the doc and get the news...is anything new there?  Are all my wonderful plans for patient advocacy on hold?  That e book is on its way...I hope to be late for my own funeral as well....50 years from now ..:)

I am know I am cliche from time to time...no serious post today...in order to recover from the past you must move forward...It is impossible to forget many things however you must forgive...especially yourself and move forward...one day at a time...do new things...meet new people...fight to not just live...but to have a life.




Tuesday, October 2, 2012

Off Blog until End of October

Dear Friends,

I must get my book out...and I am doing some traveling so I am not typing for a few weeks.  I also have scans...wishing you all love and health and I will be back soon!

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...


Friday, August 31, 2012

Off Blog for a Few Days

I am off blog for a few days due to work and ...work...been crazy in a good way :)...the most viewed posts continue to be

"When I Had No Hair"

"Sex and Cancer"

"He Jumped off the Bridge"

"Road Trip and Realizations About Life"

and many beginning posts from 2009....3 years ago...:)

I am almost finished with my e book....

It seems like most people are interested in the emotional stuff going on rather than the technical info...coping skills ....there are never enough....I continue to learn everyday...the learning and open mindedness is most important....being open to everything that is new and possibly fabulous....be back in a few days ....labor day weekend...and I am laboring :)

Wednesday, August 29, 2012

Medical Underwriting and Prescription Drugs

This is one of the most important posts that I will ever type.  Every person when applying for health or life insurance needs to be aware of how their medical records are written.  You also need to be aware that you are not prescribed drugs like they are candy...seriously...no "just in case you need them drugs"...it could ruin your records.  This has a lot to do with your later bills....

For example...the difference between actually getting approved for health insurance or not is the difference between taking advil or vicodin for pain.  Many people will see their doctor and they will be given a prescription for this "just in case"...then it is over...your underwriting...over...you can not tell an underwriter,"I got these pills however I never took one...or I just took one!"  Does not work this way.

I do realize that when you have cancer ...this does not matter however healthy people are reading here as well...do not do this!   More later today....and by the way...always have copies of your medical records!


Sunday, August 26, 2012

Monday Back To Business

For the entire week I will talk about everything having to do with paying those medical bills......a lot of it is not fun and requires much work and time....a lot of time...and knowing what to say..and when to say it...and places to go for resources...and maybe not even getting them paid...ever...that happens too....

This last week I have had to delete comments from many folks wanting to advertise their businesses...even one comment on my post about sex and cancer from a porno film company...that was a riot...:)...I did not rent any movies :)...at least not today...:)

So please do not advertise your business here...write your own blog and do it there :)

However please view my own link and watch me grow my business!

http://crowdfundinglive.com/amy


School of Multi Dimensional Healing Arts and Sciences

This is where I was yesterday.  I was volunteering at the desk and visiting with a gal that I see there...again...I am not here to discuss your religious preferences...I just believe that everyone has a soul...that there is a heaven...and we all go to the same place...why people have to fight over their beliefs in God...is such a waste of precious time on this earth.

This is an alternative school...there are medical practioners...folks that believe in certain energies ... mediums/physics ...the list goes on and on and on...

I sat down with a gal awhile back  who knew nothing...nothing about me...just my name..and she began to tell me things that no one else could have known..I did not speak the whole half hour...she told me my Mom's name...and my ex husband's name and that they were here today...I was in shock..She said ..."There is a man that really hurt you recently...he is far gone and you have to let him go...he is gone from your life...not coming back...ever..

She went on to tell me that I have at some point some more medical stuff coming however that I would recover and in 2/3 years I will not recognize my life in a great way....I was not sure how to feel about this one...:)..how much more medical stuff can any one person do ...lol....however if I live and do not recognize my life eventually...I guess that is fabulous.... crap....lol

...That as of the near future my life is all about work....and the patient advocate work that I would like to do and going back to my insurance roots...She said there will be a man that comes along for a little bit however I will recognize that he is not what I am looking for....she says the man after him is the person that I will spend the remainder of my life with...now that was a riot....I think for now I will just stay single :).  It is so much work...:)

Lastly she wanted me to know that my Mom and Ex Husband are always with me...especially my ex...he seems to hover over me always...nice...we should have worked harder at our relationship while he was alive...I do miss him terribly...I know he is free of illness where he is...,,,

So...what do you think of this post???   I never believed in all of this until I actually went to this school...I find it comforting to know that a few people really have these skills...and that I can sit and listen...I just hope that she is 99% correct...especially on the living part :)...happy Sunday


Thursday, August 23, 2012

Making a "Home"

I will go back to negotiating medical bills shortly....Well here I am back where I have spent most of my life....where I have known people a very, very long time.  I love being around all of my old friends however ...I know someday I will go somewhere new again....I hope...stay healthy and wander some more....

I am speechless sort of this evening...culture shock I think...last time I lived in this area I owned a home by the mountains and cancer had just invaded every part of my life....at that moment everything just seemed so out of control...because it was!  That was 2008...my ex boyfriend had just moved to Dallas for personal reasons.  My ex husband had passed away...and I was in my 2nd straight year in a row with this crazy disease....which I had already done once in 2001 and once in 2003....and a year before I started blogging.

After I had to sell my home due to so many bills and me being so very ill...I moved to Los Angeles by UCLA ...After that I stayed with many friends while my kids were at college because I did not want to be sick alone...and I saved a lot of money...and a lot of my friends saved me....I have amazing friends to this day.

I also never really made a home because I always thought eventually I would end up in Dallas...not..:)..So now where do I really want to make a "home"?  Will I ever really have that "homey" feeling again?  Do I really want it?  Not sure on all of this...

So I will stay where I am for now...work very hard...and enjoy myself....after all it is not the structure that makes the home...it is who is in it :) and what we do with our time :)




Monday, August 20, 2012

He Jumped Off the Bridge

The Director of "Top Gun" jumped off a bridge today and killed himself because he found out that he had an inoperable brain tumor.  I have been thinking about him a good part of the day in various ways.  I want to share my thoughts...

1.  Part of me gets this.....however I just do not think I would have the guts.  I get this because of the potential suffering that he would have to endure ...and there have been moments although never near death that I thought that I was finished with all of this....after over 11 surgeries....many chemos..etc...I just felt finished....however...

2.  What has this man has done to his family and friends....In my battle with cancer I would like to say that it is all about me...but it is not...it is the big pendulum that swings all over the place from me...to my family..to me...etc...I am not fighting so hard all of these years for just me...that would be easy...

I am wondering if he gave family and friends closure...the chance to say good bye....saying good bye means a lot...dying a peaceful death means a lot...I am not sure how religious or spiritual you all are...I just think jumping off a bridge might bring added heartache along the way on your journey to where ever we are going when we leave here (not debating that today :) ).

3.  He may missed something very important.  I am not sure how much time that he actually had left however if he could make it to the bridge by himself...he most likely has some good time ahead....what did he miss by leaving too soon...something I imagine...many things I imagine.

I have visited with many sarcoma patients over the years near death...they were close friends of mine...I held their hands...we laughed...talked...they were peacefully surrounded by family and friends...dying violently if given a choice ...just does not fit....there is enough violence in the world.

4.  I would also like to acknowledge that he may have been quite mentally ill and lost his sanity...cancer will do that to folks ...I am sad for his family either way.

I have gone to great lengths to deal with this disease in a very sane way...and I have succeeded...it seems crazy to be so fine after 11 years.....no bridges for me....someday ( a long time from now)...just give me lots of drugs so I can sleep and have my soul just float away...




Leave Your Past Behind You....

It is very hard to leave the past when You are packing.....it is a constant reminder.  11 years of cancer reminds me of both wonderful and heart wrenching times.  I can not wait to be settled...everything put away...so I can jump right back into the future....tomorrow!

Thank Heaven.  I will off blog until Thursday.

Saturday, August 18, 2012

I Wish I Knew

I am still packing...and I am not sure if I should have deleted my last post...but I can't...cause it's how I feel...So at 55 myself ...and looking at all of those memories...I realize that I have had a great life most of the time....:)...

I just wish I knew that I had lots and lots of time..big time...for me big time would mean my 70's...funny right...however with rare cancers we are weird thinkers when it comes to time....

So maybe enough time to help a few thousand people as a patient advocate...or enough time to be a bit political regarding healthcare...

or just watching one or both of my kids...be in a profession that they love...in love with wonderful guys...having great lives...that would be cool :)...it's Sat night and I can't wait to be done packing .

Thursday, August 16, 2012

Even More Negotiating.. Your Medical Bills

You have read the other two blog entries...it seems like I am going backwards...I am not!  :) Ok...getting ready to call or see someone...

1.  Write a script...seriously...write a script...would you open a business without a plan???  Know what you are going to say...before you say it...you will be more calm and more in control of the conversation.

2.  Tell the truth!!  Do not lie!  Be honest about your health condition and your financial situation...If you lie and get caught later it is not a good thing....your arrangement that you worked so hard for will go out the window...if you are looking for a debt to be totally forgiven you have to discuss that as well and tell the truth!

3. Get a supervisor if you can...I hate talking to people that have no authority or have no idea what they are doing......if you feel the person that you are talking to is not able to help you ...ask for someone else..if you do not like that person...ask for someone else...

4.  You have to put the time in...these calls or meetings take a long time...make enough time...do not be in a rush...Speak in friendly but business like tone...let the person know that you know what you are doing and this is all business....no emotions here...no pity party...you are working on recovery and need help.

More tomorrow...all of this and more coming in my e book in Sept.

http://crowdfundinglive.com/amy

More on Negotiating Medical Bills

Assuming you now have all of your paperwork in order.....Your bills...dates of service...if your insurance company paid...or not....there is one big decision you really have to make before you start this process...and I say this with all honesty...will you ever pay this bill no matter how much it is?  Do you have the capacity to pay at all over an extended period of time?

If you have not paid your bills in awhile...for whatever reason...and you never will...you may want to consider the bankruptcy option to give yourself a fresh start...Of course if the medical bills will never stop...than it might be best to not do this...

Good bankruptcy attorneys will see you for an hour for free...and discuss openly your options...I would always seek two opinions...and if you are nervous please take someone with you to advocate for you in seeing the attorney.

The attorney fees vary...the cheapest is not necessarily the best...nor the most expensive...have all of your questions written on your lap top or paper....go in with your own best interests in mind ...

Seek some financial advice before hand....have a budget...make sure that your living trust is done as well or will....

More on this next post...

Wednesday, August 15, 2012

Negotiate Your Medical bills

Whether you have insurance or not...You can negotiate your medical bills...Most people with financial issues will ignore their bills....they will let them pile up and forget about them...because it is so painful.  Please do not do this.  It will actually give you a sense of accomplishment and power knowing that you are taking care of yourself...or at least trying.

If you can not make these kind of calls ask someone to do it for you..someone pleasantly assertive and not shy at all...:).

How do you do this???   Some tips in tomorrow's post and much will be in my e book end of Sept.


Tuesday, August 14, 2012

Road Trip and Realizations about Life

I am sitting at the Kansas City Airport waiting to connect to Los Angeles.  I just drove from Los Angeles to Indianapolis in 2 days...yup I am crazy..with my daughter...we decided at the last minute not to stop in Dallas at all...we just drove...

In west Texas we got stuck on the road in a monster storm.  The rain was so severe that we had zero visibility in the middle of no where...my daughter turned white with fear...I laughed and she got mad that I laughed...I really could not believe the lightening storm...it was beautiful.

I told her that tonight was not the night that we were going to get hurt or die...however this night was a gift of a fabulous memory...that each time we do this crazy trip that it will be one of her most vivid memories...of us...our thing...this is our crazy idiotic thing that we do ...and this is our last time doing it because she is graduating this semester...and we will ship her car in Winter.  I am not doing this drive in Winter...I am not completely crazy :)

And I hugged her good bye again...as I have done every year...and I cried...she asked why I am crying now!!!  Because you are my daughter and I love you...and we are getting older...and I am still here to see all of this...and healthy enough to do anything that I want...and I am still working on re building my life from all of the illness (in the last 5 years of it)...I get to do it...amazing...and I will...

I will continue to have ups and downs I am sure ...that is life..but look at everything we have done so far....amazing....

Choose to have an amazing life...even when big, bad stuff happens...people walk in and out...so does money..so does your health...you can still have an amazing life :)....if you really want to.


Friday, August 10, 2012

Off Blog Until Aug 15th...

Driving my daughter 1750 miles to college!  Yay!   Please read other posts and talk with you all soon!

http://crowdfundinglive/amy

Thursday, August 9, 2012

Survivor Guilt and Post Traumatic Stress Disorder

I am always supposed to be talking about money however this influences money in your life as well.  Our brains are wonderful instruments.  They give us the capacity to re live moments ..both the good and the bad.  We relive these moments when want to...or do not...and our capacity to be able to control how we re live these moments really counts for our survivorship..and sometimes we just can't control how we feel or what we feel.

I remember many not so wonderful things about cancer...however I have been very fortunate for the most part to be able to put it all in a place where I have not gone crazy.  However I can remember some moments vividly...

I remember the day the epidural just did not work properly and I woke up from what I think was my 9th abdominal surgery...and I just thought...if I died right now...it would be ok...I was in that much pain..and I could not call out to the nurse....

Then there was the other surgery I woke up from and I was ok...however I started to feel around to figure out which body parts that I had left....I was looking for both kidneys!!!  They were there...and the list goes on :)...

There was also the time I had my chest port removed while I was awake in 2001...I will never forget that...it was crazy and I did not feel a thing...I just could not understand years later...why I did that!

And then there are all of the wonderful people that passed away...My daughter asked me once why I have so many friends with cancer...how do I deal with that...well I just love us...all of us.  I feel enormously grateful to be able to help anyone....the way people have helped me...with and without cancer..

More about this subject tomorrow.

http://crowdfundinglive.com/amy





Wednesday, August 8, 2012

Your Capacity to Enjoy Life

Trying to enjoy your life in the middle of illness is difficult...positive attitudes are for crazy people as there needs to be a clear vision regarding how to go about your daily life and learning how to take care of yourself on every level.  It is a job...your new job..

I have found the capacity to enjoy life is always just in the moment...in that moment.  In that moment you know exactly what is going on...there are no surprises...just the joy of that moment.  It could just be when you are starring at the moon...or listening to your favorite song..or hugging your best friend..

You are not thinking about the past or the future..you are just there...that is what has really saved me all of these years.  That is where I find the strength to plan and to live.  So find your moments....even if they are few and far between...that is where your strength is...for those other moments.

http://crowdfundinglive.com/amy  


Marvin ...Music Brilliance

Marvin Hamlish passed away too young in his 60's.  How many women or men listened to "The Way We Were" and/or saw the movie and did not cry for days thinking about an old boyfriend or girlfriend???  LOL!

Thank you Marvin for every piece of music (and the list is endless)  that you have ever composed.  You have shaped so many memories for so many people just listening to your music...what city did you see Chorus Line?  RIP sir!

http://crowdfundinglive.com/amy

Tuesday, August 7, 2012

In Transition

Tonight I went for the chocolate cake...I admit it!  I feel good...thank heaven with all of this change going on again I feel good...if I did not I would truly go more nuts...more than I already am!

I am ready for the end of August...I will have moved...I will be working hard and my daughter will be back at college :).  We are driving to Indiana the end of the week and for me it is a crazy drive. I thought we were flying ...oh well..last minute change...why not a little drive from Los Angeles to Indiana???

We go through 8 states in three days...we stay over night ...one night in Tucson...one night in Dallas..and land in Indiana..

Dallas and Tucson are fun places...wish I was not in such a hurry :)...I have very fond memories of both of those places over the years...especially Dallas.

I hope many of you have looked at my crowd funding sight...remember a pledge of $10 buys you my first e book on patient navigation and all of my gratitude!

http://crowdfundinglive.com/amy

Thanks!




My Crowd Funding Project

Please help me help others!  Every pledge receives a gift!  Please tell me what you think as well and send this  out to the world!

http://crowdfundinglive.com/amy

Sunday, August 5, 2012

A Few Tips On Buying Health Insurance

I do not sell health insurance however I am licensed to do so and I am quite educated in all aspects...and the cancer stuff has  taught me everything I need to know in a good and bad way :)  So here are some short tips for you in buying health insurance...and please no advertising your business in the comments...I will delete you..

1.  Buy health insurance as if you are already sick and using it.  That is when you find out how much it really costs....

2.  Sit down with someone in person...an expert that has been doing this for years. These people will take the time to explain plans to you...how they work...and the cost particulars....where and with whom you can receive care.  Do NOT do this on the internet...it is too complicated....and most people have no understanding of what they are really doing...take the time to insure you health properly.

3.  Remember that this may be the last plan that you will ever go through underwriting for...you buy a plan and God forbid you get sick...and your underwriting status changes...this may be the only plan that you can ever get....make sure it works for you.

More on health insurance tomorrow.

Saturday, August 4, 2012

Packing and Unpacking..and Unpacking

I know I am supposed to be talking more about money however today I am packing to move...which I just did about 14 months ago.  Moving for me has become pretty routine since I am now a minimilist and it is very easy however moving involves looking at all of your things over and over again.  That can be kind of hard sometimes.

When you do not move,  all of your things are tucked away in safe places and you do not have to remember.  I work very hard at remembering the things that I enjoy and people that I love ...but sometimes when they are in and out of boxes over and over again...it can be a bit stressful.   As I stated previously I believe I have one more move left before go somewhere for a very long time.....I can not wait already!

It's not the material things that I am talking about...that is the easy stuff...I am talking about the pictures, the momentos, anything that can trigger an undesired memory...even a picture of the house that I used to own...that is a tough one.   I do have memories of great joy there though.

When my Crowdfunding project comes up on Tuesday I hope all of you will contribute so that I can help folks all over the country...I am ready to wander...I would love to come speak to your group in your city. 

I would like to become the wandering Patient Navigator....maybe I will land in a place in the United States that I will just have to live in for awhile!  I am getting really good at this moving thing...Tuesday's launch is just around the corner...more about money coming...

Friday, August 3, 2012

Money and Your Relationship with It In Illness

I could type forever about this one...I never thought in a million years that I would ever have "money issues"..however I also thought that I would never have cancer on and off for 11 years.  I also never thought in 2001 that our healthcare system would be so bad...and get worse...or that most of my family and ex husband would pass away during this time...or that the moments would come when I was just so tired or sick..

Then there is just normal life...:)..good and bad decisions...etc...so where to start about money??  Here are some general tips before getting very specific...

1.  Please be organized and have all of your papers in order... where they are handy...not locked in the safety deposit box...you get sick..no one knows where the key is or there is no other signer on the box...you can keep copies in there if you like...Be reasonable and practical..Keep things handy.

2. Find someone that you really trust to help you with financial stuff..not someone you love so much :)..not your aunt or cousin that has been in the business and you feel obligated to see them...this is your money...and it can easily melt away....make sure the person is an expert at what they do.....check them out :).

3.  Have your medical directive done...long before you are really sick....

4.  Have your will or living trust done...where are your kids going...money...stuff etc??

5.  Go through your papers..how does your medical insurance really work?  Life insurance?  Annuity?  etc.

6.  Any Long term Care Insurance?  Disability?

7.  How does your employer see your illness?  What are the rules?

Thursday, August 2, 2012

Scans, Results, and Emotions

Next blog is about money...lol...One of the reasons I speak so personally here is that I hope to teach something to someone who will walk in my shoes someday and many will....with healthcare being what it is and we living longer ...more medical procedures done to us....it is just the way life is now..

My scan results are..two dots that we continue to watch and are unchanged...they could be dots forever...they may not even be cancer or they might...they might be the window of things to come...whatever they are...I now get the Fall season..to work...have fun ...and whatever...this is a big deal...I am going to get to a whole year with no surgeries..

The funny thing about long term disease...the emotions run high...I am not jumping up and down with joy as I should...I am happy ..however it takes awhile to sink in...

And I am recovering from so many years of stuff...that one good scan report is just a relief...more than the jump for joy thing....I will do the jump for joy thing before my next scans...:)...just in case...There is always hope...I know this...always

Wednesday, August 1, 2012

The Art of Gratefulness

Gratefulness is an art...I am sitting here waiting for them to call my name for my MRI...I went to the Chapel today before coming here and I prayed...I prayed for at least three more months...I have no chest ports anymore...I dance, I swim, I walk ...I have plans for my business.

I thought about how grateful I should be for everything in my life...I am...and the other side crept in as well...the side that is angry ...the side that is missing people, places and things...then it crept back out...and I was once again grateful :)

So gratefulness is an art and I need more practice...practice to believe that fabulous things will still happen...really fabulous...mind blowing fabulous things...and life will not continue to be this enormous pendulum that swings back and forth making my life a little too crazy...even for me...I hope the same for you.


Tuesday, July 31, 2012

11 years August

I have been dealing with cancer in one form or another for the last 11 years.  11 years ago at this time I was feeling a little bit tired and my stomach was bloated.  I had no pain.  I went to my ob/gyn..who then ordered my very first scan....and there it was...that big lovely first tumor.  I was 44 years old...working out at the gym , taking care of my kids,  newly divorced and all was ok with the world..until that day.

I called my ex husband crying..little did I know that he would pass away of a heart attack  5 years later.  I miss him..he was still my one of my best friends of all time.  He was also a great Dad.

This is no pity party...I have had lots of wonderful things happen in these years as well.  However if anyone would have ever told me that I would have a rare cancer on and off for all of these years...I would say that you are crazy.

amyresiliency blog is on hold due to webmaster issues.  In honor of my cancerversary..tomorrow we will talk about money and illness...and things you need to prepare for...and do.