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Saturday, November 26, 2016

Giving you Thanks

Happy-ish Holidays Y'all!

Thanksgiving was Tracy's favorite holiday and when he could no longer eat he STILL loved it because he couldn't wait to see people's reactions to his recipes so this one is still bittersweet.  
(Maybe I should say bettersweet- 
as it was a bit better than last year in some ways).

Tracy loved to make meals to bring friends and family together.
Our Daughter Rachel has run that gantlet with amazing success this year again. 
The Austin Orphan's Thanksgiving 
was an incredible success
 and we have already discussed 
how to upgrade it for next year.

As happy as I was to spend time with family and new friends, there is still that constant reaction to want to "tell Tracy" oh- look at this, did you hear that?  What do we do about this?
I keep thinking I should be farther along in my healing journey after a whole YEAR which feels like 10 lifetimes.   And yet the year has flown by too.  
I hear that from others in my situation as well.
Time makes no sense  anymore (and I wasn't too good about it BEFORE our ALS Journey). 

I have done my best to stay in touch with all the new friends (and a few old ones)
 that are part of the 
~Dead Spouse Society~
 this year.  
-A club none of us wants to be part of
 but are forced into.
I am/was NOT one to race to join support groups
 and pour out my problems 
(no matter how good it is for me). 
But I am finding there is this natural migration towards those who have lived in the trenches.
The great thing about it is the absolute freedom there is between us, 
some of whom don't know each other very well at all.
It feels fairly easy to express the Truth of our situation to each other in a way I had not experienced previous to our ALS journey.  
We can make crude, rude, sad, honest, hilarious, disgusting, outrageous, nonsensical jokes or conversations about ANYTHING to each other because we have all LIVED it. 
There is no judgement.  
Life's rules don't apply to us in the same ways anymore because 
- really- what are ya gonna do to us?  
We have survived (??? at least partly) 
the WORST that life can throw at us so
What are they gonna do to us? 
Sure I gripe and get ticked about average stuff 
but none of those are REAL PROBLEMS anymore.

Honestly- I am surprised how helpful it has been for me to chat and share with these strangers that have become important heroic friends.
I still don't have the courage Tracy showed to brutally share the realities of all this journey has heaped upon me, but I am light years from where I started in 2011.
I keep thinking I am gonna help others 
but I seem to get more than I am giving and am continuously surprised by that.  
( Slow learner here).

Before ALS I was a very private person
and I really, really miss privacy on every level.
But what I learned from Tracy is that his sharing made such a difference in so many people's lives, in so many ways, it feels selfish to me to not attempt to allow others to learn from our experience 
( in hopes they can skip some of the hardships of our trials and many many errors).  
If I can save even one person a day of misery in any way- it's worth that sacrifice.

Friends and family often express the idea
(sometimes verbally, sometimes in body language, actions, expressions or what they won't or don't say)
 that I might be healthier and happier if I would just take some time away from it all to let myself heal.

I have tried.  Really I have.  
But it seems like each time I do,
 the Universe will throw a text my way or a situation or a phone call or commercial or another person's health issue in my way,
 creating an absolute impasse,
 unless I find a way to deal with it.  

I am so so thankful to all those who helped 
Tracy and me
 and that continues even now.
If it wasn't for those who were kind enough to reach out and communicate and share and support and  listen or tell a shockingly accurate situational story
 I don't know where I would be.

Thank you all for the love and encouragement and friendship and jokes and pranks.
Thank you for remembering Tracy
 and sharing photos and stories of his crazy life.
Agree or disagree
 but do it all from a place of love 
because I have learned 
that as corny as it sounds-
It really is all that matters.


Sunday, October 30, 2016

Ask Questions before accepting answers

 Who do we believe and why?

I don't have answers.  
I have questions.
Those questions allowed me to find out that not all answers are created equal.
 
In some ways I believe now that not really knowing much provided me with an opportunity to ask questions others would be too embarrassed to admit they didn't know the answers to.
I started with NO knowledge, not even enough to know what questions to ask!!
I still don't know very much
 but what I learned is to not accept the first answer that comes along as fact.
 
I want YOU to start questioning everything
 you accept to be true
 just because someone told you it's true.
THINK!!!
Make the information pass YOUR test for logic
as my father would say.
 
What I have learned from our politicians these past few months is that 
EVERYBODY has answers!!!
They might not be to the questions we are asking.
They might not be the correct answers.
The answers might not make any sense at all.
But boy oh boy everybody sure does have an opinion that most of the time
they speak as if it is fact.
In the words of my friend Dorothy:
Throw a percentage behind any trivia and most people will believe it's true.
 
 
 
So the FDA in 2013 says they are backing off of some antibiotics. 
Why would they do that?
Obviously because there is enough evidence showing cause for concern for our health is my guess.
Not a fact. It's just my opinion.
But we are still allowed to eat the food they believe is unsafe while they transition with NO warning label or commercials by FDA- but they know it's bad for us. 
Right?  
I'm looking for answers to try to make sense out of this new world I have been forced into. 
I used to believe most of what I was told by "Professionals",
cause come on, they know more than me about a lot of things.
Things just don't make sense to me- 
but no one else is acting all freaked out so....hhhhmmm...
What am I not understanding here?

 Take the commercials on TV NOW that send the message-"don't be a fool by falling for this marketing hype about antibiotics being bad for you" with an actor portraying a goof with an IQ of about 30 showing how stupid we are for being gullible enough to fall for ever thinking animal raised on drugs will in any way be effected by them if they stop using said drugs in the magic amount of time to pass "the FDA test" (the same organization that tested them to say they were safe to begin with that are changing their minds) for what THEY think is a reasonable risk to OUR health. 
 
Why are they allowed to purposely put our health at risk by telling us things in a way that will harm us? Isn't some sort of crime if a business cons us with the intent of making money knowing it is a risk to our health? 
 If a toy manufacturer sells a toy that later spins apart and blinds a child, or a phone catches fire or a car's air bag kills someone what happens?  
They recall it.  
They Stop production until they change it.
You don't see continuing advertisements selling these BAD items do you? Or do you?
I don't really know.  I'm just asking questions here.

But they are following FDA regulations so they are not at fault so we have nothing to worry about I guess.  Our meager little minds can't conceive of all the complicated jargon that now makes our unsafe drug ridden food magically chemical free is the message they are sending to us and I sure am confused so maybe they are right.
 
Now here you have a gal who is explaining exactly WHY these animals are "safe" to eat because it's HER BUSINESS to do so. 
And Because they meet the FDA regulations she says.
The same regulations that they started changing years ago.
So...since I don't know much about anything it's very confusing to me how the very agency this gal is using as her meter for safety, that has ALREADY had to recant their decision that it's SAFE to eat antibiotics, is telling us WE ARE STUPID for not believing her opinion that this is all safe. 
I believe her rant began because her business got slammed in this CNN report.
But I don't know really.  I'm just guessing- as do most people who put information out to the public I am finding.

 If you sculpt a donut out of cow poo but it looks like a chocolate donut and it's decorated like a donut and maybe they can even make it smell kind of like a donut-
it's still a pile of crap.  
But a lot of people will believe it's a donut.
 
 So- Why am I posting this? 
 
I don't care if you eat healthy or not.
 I care that if you WANT or NEED to eat healthy you CAN
 and that if there are delicious deep fried, chocolate covered poisons
 you want to enjoy
 YOU have the right to KNOW
 how much poison is in there 
so ya know just how much you can handle.
Your life. Your choice. 
 
In our ALS journey we were told things that were NOT TRUE by (well meaning ?) medical staff repeatedly.  For a long time we believed them.
It cost us valuable time and changed decisions that could have improved the quality and/or length of our lives.
We were also repeatedly, consistently chastised for bringing the medical world healing information that was HEALTH and FOOD related- not drug based.
Each time we were given the same answer by each person. "There is NO PROOF" that works.
Don't get scammed.  If it worked wouldn't everyone be doing it?
 
When I asked if they had done or were willing to do any research about it I was told by doctors and ALS association groups that the money from those campaigns you all were so generous to donate to ONLY goes to DRUG research controlled by the FDA.
Guess what- LIVING, breathing, working people 
ARE PROOF
 that something is working better than nothing 
which is what those with ALS are offered by the medical world.
I can find NO cases of people being 
"healthied to death".

I do however personally KNOW people diagnosed with ALS and had their cases RECONFIRMED as ALS that have REVERSED their symptoms by means of extreme healthy living practices.
ALL these people say the same thing.
Most doctors consistently refuse to accept or share or even listen to how they are healing themselves.

We are brainwashed to put our first trust in people we do not know that have NO PROOF that what they say is true because of their position in business and we are taught reasonable nice intelligent people don't fly in the face of "their qualified opinions". 
 
I say RESULTS ARE PROOF. 
First hand results are proof.

If a doctor tells you there is NO HOPE. NO HELP
as we were told over and over again,
that just means THEY don't have the answer-
not that there aren't answers.
Find those who have accomplished what you want to.
They are out there.
They want to help.
HealingALS.org
Donate today so
others like Tracy 
have a chance.

Friday, October 28, 2016

The Dewie Effect

Yesterday I did things all day that I thought Tracy would love or love to do.

Today I went to a funeral- 
something Tracy would NOT do. 
Not even to his own.
Seriously.
He didn't want a funeral for himself.
Tracy never ever went to funerals with the exception of his mother's just a year before he died.
He hated the whole idea of sitting in the sadness and macabre details of the demise of a life.


Today I went to the funeral for Dewie Quortrup,
 another ALS angel who left the planet Oct 23rd.
It was heart breakingly beautiful.
As family, friends and caregivers spoke
each and everyone of them mentioned 
"The Dewie Effect".
This is the instant and overwhelming, 
undeniable feeling of
unconditional love
 you feel in her presence. 
She couldn't speak or move at all and yet- 
there it was.
I was absolutely stunned by the intensity
when I first met Dewie and couldn't help but
blurt out what I could feel but not explain.

Pete, her devoted husband, just grinned as he had heard this from Dewie fans around the world 
their whole life together.
He named my loss for words and explained that
I was not crazy or imagining it.

To hear person after person at the service
 expound on this intangible, magical mystery,
it validated so many things one tends to contemplate
when put in the position of widow or widower.

To be honest it was horrifying to me to see other ALSers
still on their journey, 
sitting in the audience, forced to watch
and imagine their own limited future.  

It's difficult to sit with friends who have themselves, 
lost their loved ones recently knowing the
deja vu of emotions being replayed when all I can
do is just let them know they aren't alone.

To listen to Pete elegantly and eloquently yet painfully convey all that Dewie was
and what we have all lost and will miss
 almost made me agree with Tracy- 
that this may NOT be the
best way to show support.

But there was also so much to be gained by sharing this day.
I felt so Lucky to be allowed to be there
to experience the deep love and commitment 
by those who willingly took on the challenges
of caring for someone with ALS. 
To hear each speaker glow about Dewie's smile
and vibrance and JOY in life up to her last day is
such a lesson to us all.

We are NOT alone in all this.
Love is NOT an intangible.


I went to GIVE my love and support
 knowing the challenges that lay ahead for the family, 
hoping to be helpful even if it was only in some
small way,
but once again,
I ended up receiving so much more than I gave.

 ~What I learned~
The best we can do in this life is to
continue to Share 
The Dewie Effect
with each person we meet so that 
they can experience the unconditional love
Dewie shared with us all.
This is called Living.



Thursday, October 27, 2016

Playing Tracy

Thank you all who have helped me make it through the first year of living without Tracy.  
Something I haven't done since I was 15 years old.

To celebrate my survival
 and
 Tracy's wild wonderful life
 I plan to do "Tracy things" today.

Tracy loved to cook and was really good at it.
Man I miss Wednesday Night Feasts.
There are moments when I have seriously considered contacting a Voodoo Queen to reconstitute Tracy in order that I can have just one more batch of his Chicken and Dumplings, Chili or Monte Cristos.

I have baked cookies and eaten enough for both of us- twice, already tonight in preparation for tomorrow.
I will "stir the pot" Tracy style.  Politics, religion, fashion, education, vaccine, medicine, money.

My kids are brilliant and are choosing to play Tracy {and Jim} (his best friend and work partner for 25 years) and are going to be "niced out" (meaning it's too NICE to Work)  followed by the typical movie theater marathon.  
I am going to jump in on that brain storm!

Going to eat afterward could be anything from Korean, Sushi to Hot Wings or Red Robin.

I "plan" to spontaneously follow all nonsensical  impulses just for the fun of it.

I will open my doors and blare my music until the windows rattle.

I will drive while clicking the radio button repeatedly saying each time, The next song is the BEST song EVER, no, the NEXT song is the Best song ever.....

I will brag endlessly about each and every activity my children and grandchildren have ever done or thought about doing or talked about doing and beam with pride KNOWING they are the best kids ever.

I will make terrible jokes, TERRIBLE, and laugh at myself like I am the funniest person on the planet.

I will watch Bruce Lee, Jet Li, Van Damme or Steven Seagal movies followed by Planet Earth.

I will tease my grand kids.

I will buy a ridiculously extravagant gift just to watch the reaction when I give it.

I will love endlessly and selflessly.
 



Wednesday, October 26, 2016

The Truth

I just found out that yet another ALS friend has passed away.
This just days away from the one year anniversary of Tracy's leaving the planet.
Perhaps I am just over emotional due to the stress, sadness and frustration but things just don't seem right.

I have been told repeatedly by many who love and care about me to give myself time to heal.
Focus on myself and my life.
Don't upset myself chasing rainbows and upsetting myself over things I can not change.

Spoken and unspoken opinions, real and imagined about the "truth" of our journey and possibilities loom, ever present.

To be honest, I have spent a LOT of time considering whether my beliefs and paths were just a dream I created to ignore "their" truth.  Was I just completely in denial as they say?  Were we 100% doomed as explained repeatedly from the moment of diagnosis by the medical world?

If so - how do I explain the fact that Tracy DID do better when I followed the advice of those using common sense health methods?  I know I myself felt better when I stopped eating processed foods and started nutritional supplements.  I know I feel a lot worse now that I have become lazy and fallen into old bad eating habits.

How do I explain the people I have been speaking to from HealingALS.org for YEARS now that have all improved their health after being diagnosed EXACTLY as we were? Some of these reversals have been medically verified already.

How do I explain the doctors absolute refusal to discuss ANY of the successes Tracy achieved?


I've spent a year doing my best to ignore the pain and agony those being newly diagnosed each day are going thru in order that I can gain some perspective.  So that I can see the TRUTH of the situation.

I see it the same way I did a year ago.
Millions and millions of dollars have been spent on finding a magic pill to "cure" ALS and we are no closer now than we were 80 years ago to having that happen.

But we DO have more than 20 people who have found the SAME WAYS to heal themselves of the diagnosis and symptoms of ALS because they REFUSED to give up. They refused to listen to the negativity and hopelessness heaped upon them by doctors.  They have come together to share what worked for them and find ways to share it with others in need.

But the truth is too uncomfortable for the public to invest in.  They are willing to continue to throw money at marketing campaigns to feel good about themselves never taking enough time to realize they are paying salaries and getting NOTHING to show for it.  Zero success.  ZERO in 80 years.
$128 MILLION DOLLARS just since the Ice Bucket Challenge in 2014.

HealingALS.org is a group of highly educated volunteers that have beaten the odds and reversed their symptoms.
They want to share those ideas with the world.
Donate to them NOW so others just like Tracy can have a chance to know the TRUTH.





Tuesday, September 20, 2016

I'm not him

By now you have probably noticed a slowing in the prolific pace that was once Tracy's blog.
I had fully intended to continue posting helpful, useful, passionate, information in a brutally honest fashion to honor Tracy and help the world in a mirroring of Tracy's outrageous fashion.

Several obstacles have precluded me from accomplishing that task.

1).  I'm not Tracy.
2).  I am not generally BRUTALLY honest (I hope).  Honest yes.
3).  What I have to say at this point feels more like whining than being helpful to humanity.

Clearly there ain't much I am gonna be able to do about #1.

On to #2-
There are times that I am highly motivated to share an idea or thought about this point in my journey in the same bold soul streaking fashion Tracy did.  Letting it all hang out so to speak.  
But unlike Tracy I do care and consider how what I say will effect others because for me that is the POINT of writing to the public as opposed to a private diary or journal. 

This has been a constant source of struggle for me as I experienced how healing his words were for so many, no matter how naked, negative or biting his comments seemed to me.  He was "him" without reservation or consideration.  I am NOT him.  
And yet I do long for the courage to be completely honest with the world but quite honestly- Privacy is one of the things I miss the most from my previous life.

#3-
The reason I am interested in documenting or recording any of this or sharing it is to help those who were diagnosed like we were.  If sharing anything we learned could help Anyone in ANY way it's worth it to me to share. 
Tracy's goal was just being able to communicate.  The more limited his physical abilities the more important sharing his opinions and ideas became for him.  This is why you all were literally his life line.
Every response to him showed he stilled mattered.

It's coming up on the year anniversary of Tracy's Death and no matter how hard I try to ignore it- that act in and of itself FOCUSES on the very thing I would prefer not to.  
I couldn't understand why people put such importance on the worst date in our entire lives.  
Now I understand. 
It's not a celebration of that date.
It's a point of survival.
Every FIRST without our Loved One is an emotional beating.  
Each smile they miss, holiday, event, birth, breath, sale, secret, TV show, joke, meal....
all Firsts-
are a reminder of what we don't have.
It's been interesting talking to the half dozen friends who have lost their spouses recently.
ALL say the same thing.  
It's all Bitter or Bitter/Sweet.
The anticipation of whether our experiences are going to be horrifically difficult or surprisingly smooth adds tension to the anticipation of each and every FIRST.
We are all hoping that year 2 is not a repeat of the first.

Deciding what or if I will continue to write has yet to be determined.
I haven't even written in my private journals lately that I kept since our diagnosis.
I have no interest in hearing myself whine either I guess.



Tuesday, August 16, 2016

Home sick

 I leave tomorrow to go back to Texas.

It's strange to be home but still feel home sick.
It's been so wonderful being home with family and friends and so there is an expected yearning to come back home to stay.
And then there is the home sick feeling for my 
Texas Family.
My kids and grands, my work friends.
I wonder what they are doing every day and what I am missing there.

Then there is the feeling of leaving Tracy behind physically and emotionally.

All this makes me realize even more clearly that it's not where you are-
 it really is where your heart is.
I am homesick for the life I loved before ALS 
but I have no time machine.

So I do my best to look forward not back.
To create instead of recreate.
To be inspired but not live in memories.

Here is to the next adventure
which has been renamed an
"Add Boettcher".