PollyAmy Returns!

Merry Christmas!!!!

After yesterdays PollyPoopy bleak post PollyAmy nagged me all night to say- but wait! What about ME!!!???

Everything I wrote yesterday was and is absolutely true.

This is also 100% true.

I have had such GREAT days celebrating Christmas.

Today on Christmas Eve and I have played volleyball and basketball, eaten great food, worked on presents, called family, watched a Christmas movie and now we are on our NEXT great meal all with the family.

Then on to inside games, more movies, desserts and Santa time!

Yesterday I took the kids to the movies, we have gone out to see the lights, listened to Christmas Music, gone Christmas shopping,  and so much more!

Each and everything I do I think- Tracy would LOVE this, Tracy would hate this, Tracy would never believe this, Tracy would be so excited about this.  I hope Tracy would be happy with my choices this year.  

Thank you all for everything you have done for Tracy and I.

Merry Christmas to All.

Man it's Hard being Him

I had fully intended to keep a very detailed dialog of every fact and emotion that rolled through this ALS journey and have found myself thinking about writing very often but not following through.

Yes, things are so very busy in a wonderful way but the real reason I haven't blathered on endlessly is that it's REALLY HARD to pour out private emotions onto a page for all to dig through or ignore.

At least for me it is.

I marvel at how Tracy could just "put it all out there" for the world to discuss.  He found some relief in sharing his pain and regrets and love and passion.  I would very often cringe at what he called me over to read AFTER he posted.  But so many have contacted us through these past few years, sharing how much his honesty has helped them in amazing unexpected ways, that I thought it is important that I keep it going until this story naturally runs it's course to oblivion.

Like Tracy's life that may happen way sooner than I expected.

I have a tendency to want to share the fun wonderful stuff but not the not so wonderful stuff.  Yes, I am "one of those" who believe it's healthy to focus on positive, what you ARE creating instead of whining about what you didn't get or don't want.  But if the whole point of this endeavor is to actually TELL the story, omitting the less pleasant (huh, okay- sad, lonely, hurtful, miserable things) is a must.

This is why I tend to have long gaps in my writing.

But I am very compelled to share this week because there is so much good.  So much joy.  And yet there is so much sadness and so much pain.

My mother died when I was 25 and I felt it was so unfair that I should have to be without her so young.  I still miss her and still talk to her.  I have learned to live without her.  My heart is no longer broken in that gut wrenching way new grief brings but each new activity brings the thought- oh-Mom would have laughed at that, yep, I have become my mother, this silly crappy kids toy addiction is my Mom's fault....

She LOVED any holiday, as my wonderful fantastic Father does to this day.  Every story, kids mess and kids laughter was met with absolute enjoyment.  I always miss my mom around holidays, not just ON the DAY.  She bought candles she never burned and tons of holiday napkins we never used up.  She actually told us kids- if she ever died, (which she assured us she would do any day)  run into her closet and under her bed and take all of her hoard to our houses so my dad didn't see!  When she did die suddenly of a heart attack, we did as she asked and OMG!  How her Mary Poppins closet housed enough stuff to fill a warehouse is proof of magic!  She loved little silly kids toys and always had new stuff for all 9 (at that time) grand kids any time they came over- no matter how much we pleaded with her NOT to give them another thing!  Us kids laughed about Ben Franklin going out of business if she ever died and yep- within a year they closed.   We laughed about it then and now.  We talk easily about what Mommo loved and how we loved her in our different ways.

Why am I rambling on about my mother on Tracy's blog?

I guess I am trying to get myself to believe something I do not feel AT ALL at this point.

I want to believe there will be a day that I am NOT heart sick at losing my best friend, husband, love....that I will just be.  I will just live.

At this point there isn't but a brief moment here or there that the automatic thought and feeling doesn't come to me- Tracy, can you...Tracy look, I'll ask Tracy, What the hell Tracy, Tracy would looooovveeee this.  In the middle of the night, in my almost sleep I move my foot towards his side of the bed to touch his with no conscious thought until I find the empty space,  I automatically listen to make sure he is okay or open my eyes in the middle of the night to check on him.

It seems the happier I am also the sadder I am.  Each celebration, activity and experience is bittersweet.  They say you can't ACTUALLY DO 2 things at the same time but....mmmm....I am happy AND sad at the same time.  I know as a hypnotist that is impossible but I have lived thru so many impossible things so far that I no longer judge.  It is what it is.

Getting time with the Grands has been so wonderful and Tracy loved his kids and grand kids more than ANY person on the planet.  (Don't even try to compete.  I know, I know you all THINK YOU DO but I am telling ya, not even close).  Those of you who had to put up with his endless bragging about our kids feel free to post about his relentless, shameless detailed mantras you had to endure over and over again. These past couple years the grand boys were his LIFE.  He actually laughed and smiled when they came in to play with him and talk to him and crawl on him and fight over him.

 But each activity I do with the kids and grands, that I am now able to do because he is no longer here, is fun and fantastic and heartbreaking.  I am so looking forward to Christmas and yet I also think- Tracy loved giving gifts.  LOVED it.  He always had to get the BEST for everyone.  He often times couldn't wait until the holiday or birthday because he was SSOOOOOO excited to see our faces he HAD to give it early.  There is an ache knowing he won't get to enjoy that here with us.

One feeling doesn't replace the other. They are both there.  The extra joy really does help to distract from that hole in my heart.  It really does help heal me to get those hugs and cause trouble with the kids.  But man am I weepy this week. That is so not like PollyAmy.  I know it's part of the process because I've been through this with my Mom.  Of course it's different but I thought I would somehow be prepared in some way but ugh-no.

Then my mind automatically drifts to the next first holiday without Tracy- New Years- crap NO distractions from that.  Then his birthday-yikes, then OH NO!!!!  Valentines Day!  Well hell.

But all the OTHER days that aren't holidays are.....yes- just other days without Tracy too.

But I don't want to give you the wrong picture here.  I'm not a weeping sack of misery (most of the time).  I am constantly amazed at how wonderful and thoughtful and caring so so many people have been to me.  I mean I am REALLY agog with the generosity and caring people have shown me.  That stunned amazement does actually anesthetize the pain.  Perhaps not completel,y but wow it sure does help.

I am an old dog that doesn't really like to let go of what I enjoy.  I still very much love the little plastic kitty I got when I was 5 years old from the gumball machine.  I still feel just as wonderful when I remember kindnesses people did for me 35 years ago and the same as I do the ones last week.  I still laugh every time I think about 6:37.  I would much rather have something lived with that has a few character marks than something new.  Getting used to this change that I absolutely did not want at all in any way shape or form is a tough thing for me because I have been pretty spoiled my whole life.  I liked being spoiled.  HAVING to accept this change is a pretty big burr under my saddle beyond having to deal with the loneliness and dealing with the millions of financial challenges.

But here I am and I am doing my best to make the most of it.  To play Tracy and be completely honest, if I thought there was ANY way to dig him up and bring him back (insert Stephen King book or movie visual because Tracy was such a S.K. fan) I would be out there with a shovel (except that we haven't actually buried him anywhere yet).  Yes, there is a small part of my small mind that is calling out to the Universe to rewind time and give us a different option.

My grandson just hollered through the door to see what I am doing.  I am going to surprise the kids today by taking them to a movie.  We had a day of ice skating, shopping, and light looking topped with way too many french fries and ice creams yesterday and it was sooooooo much fun! Today is a sit down day:)

This brings me back to reality.  Life goes on for those whose lives go on.

Thanks for listening.  I sure hope this helps someone through their journey because Dang it's Hard Playing Tracy.

Sorry Folks- It's True

I hate to admit this but the saying You Are What You Eat is true.

Since Tracy left I have put on 10 lbs- none of it muscle.  I sleep way way more but am still tired in a totally different way than before.  I wake with my hands swollen as well as the rest of me.  Old injuries hurt again.  Old gut issue are beginning to resurface.  I now have a sore throat and headache.

Yes, grief is stressful.  Yes I have been partying and socializing.  Yes, I am indeed getting old (at a very fast rate).  Yes, the flu, colds, allergies are going around.

NONE of those is an excuse or reason or explanation of WHY I feel sick for the first time in a very long time.

The truth is ~ I am killing myself with kindness.  

When Tracy was around I fed him mostly organic foods, lots of coconut oil and olive oil,  added supplements, clean water and kept a scheduled eating pattern so this is what I ate often times too.  I massaged his feet with coconut oil or essential oils so I absorbed those too. I made sure he got fresh air and had things to look forward to.  I exercised him which meant I got exercise too.

Now I am "being nice to myself" by eating the yummy things people offer and taking time to relax-ish.  I am busy being busy so I pick at whatever is laying around many times instead of fixing a fresh meal that includes veggies.  Pretend food that is stored in boxes is cheap and doesn't rot so it's so handy to have on the shelf.  I might even go through a drive thru to pick something up with the grandboys (but honestly that very rarely happens- but it could).  I have had more hot chocolates and popcorn in the last month than in the last 2 years.  I snack late- rarely on a vegetables. I'm not being LAZY by not cooking, I am Relaxing because I "deserve it" I tell myself.

So- here is the cold hard truth.

You ARE what you EAT.

If you eat crap- you feel like crap.  If you eat live things that grow- you continue to live and grow.

If you throw potatoes in a drawer and 2 weeks later they still haven't sprouted long roots-Don't EAT them!  It means they have been poisoned with chemicals so bugs won't eat them- which means if you eat them you are eating poison.  Basic logic.

Most of our food, even the organic stuff, even the local stuff, looses much of it's nutrition by the time we get to eat it.  Supplements get bashed for just trying to sell you a product, when in the reality of our lives in the last 4 years, we have found that it is nearly impossible for rich retired intelligent dedicated foodies to get the proper nutrition daily much less those of us with health issues on a budget.  

Tracy was helped so incredibly by nutritional changes and supplements we were both astounded.  Tracy absolutely could not believe, WOULD NOT believe, in the beginning, that nutrition would play any part in healing ALS.  He changed his mind after experiencing for himself how many health issues were healed by changing his diet and adding the right nutrition.

Right now- I am being reminded of just how important that all is.  All the mumbo jumbo, new age, tree hugging, gym bunny rantings are true.

If you have a chronic health issue- suck it up Butter Cup.  Just TRY it for a couple weeks and pay close attention to how you feel if you go back to the OLD ways.

Today it's Chicken Bone Broth Soup, extra water with lemon and Juice Plus vitamins with a probiotic chaser.  You notice I just said for Today.  No big overwhelming promises that stop change.  Today I want to feel better.  Tomorrow I have to function well so I am focused on improving my health today.  One day at a time.  Will I eat junk again.  Yep.  Will I eat as much.  Nope.   KNOWING WHY I feel like poo gives me Control in my life.  Bad health doesn't just happen to the unlucky.  There is a system.  

I hope my journey helps flip a light on for some of you who have suffered with any lengthy health issues.  CHANGE what you eat and see what CHANGES for you.  Eat what grows.  Stop eating processed things that are dead.  

I'm not bitter- I am flabbergasted

Unfortunately for you my grieving process is going to include you, the cyber public. 

Why? Because that is what Tracy would have done and some how that makes me feel better for now.  

And that I want our journey to help as many people as possible NOT to have to go through our journey.  

So, with that said-

I just got a call from the head of HealingALS.org again (that I missed- sorry Tish- call ya back soon) who, in her very very busy schedule, took the time to check on me AGAIN because she cares so much.  I have never actually physically met this person but she has helped Tracy and I personally many times and others uncountable times, out of the kindness of her heart, for no money and quite often at her own personal expense because she CARES.

Compared to:

Tracy's medical GP who just got around to having her assistant call to ask if Tracy would make his appointment on time next week.....that's right.  His OWN DOCTOR didn't know he died 3 weeks ago.  

How is this even possible?

 

Her name, number and address had been given at every ER visit and I filled out every paper they told me to and they asked is it okay to share any and all medical information with any and all medical people and family which I answered emphatically YES.  We had discussed that she was out of the loop before and after his tube replacement surgery in June and Sept so that needed to be improved.  She was aware of his diagnosis because she constantly lectured me about being obsessive and unreasonable about my ridiculous denial issues in trying to heal him.  If she had cared about his CARE at all it seems to me she should have been curious enough to ask why I hadn't called in his INR numbers each Monday as I have for years.  She would have called to say- hey- what ever happened about the Lovenox shots that went on forever that I had called her about?  Who did she think was taking care of his warfarin levels all this time since this was HER job that she complained to me that I let others handle in the past?  How did the hospital doctors not ever even call her once to ask any kind of question about his standard base line health?

How is it the medical doctors can and did look me in the eye and recite repeatedly that we should NOT get sucked in by the scammers and Charlatans promoting "alternative" (common sense) health ideas because as they told us- we don't have the time or money to waste and there is no PROOF that stuff works (except for these people who are still alive through HealingALS.org talking to us).  These "scammers"  have taken the time to call and check on me and offer help in so many ways for no money while our medical doctors didn't even know that Tracy had died weeks earlier.

It's these kinds of issues that people keep telling me to just let go of because it won't bring Tracy back.  I shouldn't upset myself.  How do I live in the world KNOWING this WILL happen to others just like us if no one speaks up and makes them take responsibility for their lack of actions?

What was the point of Tracy blogging every single personal detail of our lives if not to help people in some way since he already knew what he was thinking and feeling?

Now, the truth is that even if Tracy had told me to stop it I would still be highly motivated on this path because it's who I am.  Not what I do.  It's who I am.

So...huh....thank you for listening.

(hhmmm.....Tracy was right.  I do feel a bit better).

And so it begins-

Today is the first day of the rest of my life-without Tracy by my side.

It's a sad terrible feeling among all the joy and surprise and kindness and amazement from the outpouring of love everyone has shown me and our family due to Tracy's sudden departure.

A Departure so surprising that his GP just TODAY- nearly 3 weeks after his passing called to ask if he would be making his appointment on time next week.  

Insert visual of me blinking, nearly batting my eyes and audio of crickets chirping as I processed some kind of response.

The poor gal on the phone was horrified when I dropped the bomb on her that in fact Tracy didn't need their services any more.

Quite honestly I was a bit ticked with them up until this point for not even sending a note or leaving a message on voice mail saying something- anything about his passing that I am now aware that they weren't aware of. 

 Seems that no matter how many stupid forms I filled out, repeatedly, everywhere, each time, saying yes- anyone on the planet having anything to do with medical information with Tracy Boettcher's health could share or talk or email, fax, smoke signal any of it to any other person, being or alien if it could in any way possibly help him, most especially his primary care physician.  

THIS WILL BE ADDRESSED at some point in the future.

The fact that where we left off with his doctor WEEKS earlier was a crisp conversation from her about the fact she was left out of the loop on Tracy's Warfarin meds and Lovenox shots due to an ER visit she knew nothing about (again) should have made her curious enough to keep tabs one would think.  Her omission was barely purposeful on my part and again- she SHOULD have known and been aware since I filled all the paperwork out at the hospital and mentioned to them I catch crap from her for not keeping her in the loop.

His Tube replacement was Sept. 23rd wasn't it?  We were on Lovenox (a painful shot in the gut) for nearly 3 weeks because no one but me seemed to care.  INR never did get right.  Did his doctor not think it was curious he was in ST. David Hospital  ER Oct. 5th in Austin?  I believe I called her about it. I CALLED HER with my own plan of what to do about his INR and diet because she never contacted me or called me back.  She said OK with what I had proposed.  (Why don't I get to charge HER then?)  These are all things in the past I am to let go of now because it doesn't matter....except that it will happen again to the next poor sap that comes through unless I make our suffering at their hands as painful for them as it was for us.  I know, I know...let it go....It's a new day.

So, here we are, NOW.  

"Now" being the day after the most wonderful, lively party to honor Tracy's unique life and family. 

Tracy would have LOVE LOVE LOVED this!!! 

There were tons of fun, interesting, creative, inspiring people from all walks of life there to share love and support in forms of food, music, laughter and sympathy.  

The kids were a hoot as they laughed and screeched and raced around the house in a way that would make Tracy grin and giggle.  They danced wildly to "NickiePaige" (the new duo name from Asa's lips) formerly known as Nick and Paige.  When Bob from the local live jam showed up with his guitar the crowd joined in as he and Nick shared the step- stage from the dinning room, literally playing to a full house.  Food and friends were abundant from the front lawn to the back yard and the weather held out so Bill and the rest of the Evans clan could make the perfect S'mores on the front porch and serve food with smiles and grace.  

We had relatives from Oregon and Eldorado Arkansas helping the magic unfold while Sarah played Mary Poppins and snapped her fingers (perhaps a little more work than that) to make an art gallery of photos, stories and personal treasures come alive to tell Tracy's story.  I can hardly wait to see the new memories Rachel froze in time of people enjoying the old memories. It was heartwarming to see all our families come together to create one big love fest- which was one of Tracy's specialties.

The casual theme was set by the menu from Tracy's cookbook Wednesday Night Feasts created by Rachel as a fund raiser to get us back home this summer for the Tower Park Festival and 2 weeks later to the Illinois Bluesfest, all made possible by YOUR generosity.  Sarah made vats and vats of Tracy's famous chili and gave out cards she designed and created with his recipe on them for all to enjoy, while friends, family and neighbors filled in with delicious dishes of their own for all to feast on.

Thank you all who told, emailed and shared stories with me about how you knew Tracy, many of which made our gallery wall that allowed all to get to know Tracy a bit better.  Many people shared trinkets and treasures, gifts, cards and gift cards which really do help.

Speaking of sharing.  Unfortunately Tracy shared his celebration day with my best friend's family who also lost a dear husband in a shocking passing this past week.  Jamil Couri, husband to Aggie Tony Couri, passed in his sleep while on a vacation cruise together out of the country.  Aggie, Mary Cagle and Al Tony have been so amazingly giving and loving to Tracy and I throughout our whole journey.  I am so sad we couldn't be there with them physically but they all were celebrated right along with Tracy last night.

I have been surprised by many things as of late but the creativity and generosity of people continues to make my soul fly and my head reel.  There are so many thoughtful- and I mean- people, who put a LOT of thought into ways to help us, out there.  

Since I am new to this whole widow business I am surprised at the amount of sorting and organizing and health business and phone calls and paperwork and costs and housework there is to do.  But the rest of the world evidently has every idea and has taken steps to do whatever they can to make this process so much easier for me/us.

Spiritual help and prayers, gas gift cards, paper goods, actual cash money, babysitting, jewelry,  offers to let me visit or vacation or hide out or move in, guilt free movie tickets, recipes, art, cards, dinners, inspirational sayings, emails, messages, letters and even coasters, personal momentos, songs, hugs, pictures, invitations to join groups, clubs and meetings..... and on and on.

Absolutely, without a doubt, there is no way I could have made it this far without all the help you have shared with us.  

This whole journey has been overwhelming in so many ways but now I am really overwhelmed in a wonderful way.

I wish I had all the outrageously creative words Tracy would have used to express my deepest gratitude for all you have done and continue to do for us/me.

For now it's all wrapped up in Thank You.

Love, 

Amy and Tracy

He's Baaaaccckkk

Just thought I should let you know, and I don't really know why I think that, except I think that Tracy would have let you know if he was here, and since he is now, I am, for him...letting you know that he is here.

We (meaning my wonderful son in law) picked up his ashes today and brought him home until we recycle him to the earth in some magnificent Tracy style.

Bungee jumping?

Sky Diving?

Off some roof of a giant home he built?

Have a class of TKD kids kick him into oblivion?

Make him into a craft project ( this one has gotten a number of votes and is leading the pack)?

Take him on a beautiful vacation and leave him there?

Blend him with his other relatives that have gone before?

I'd love to hear your ideas.

 

Courage under Fire

I fully intended to share the roller coaster of Tracy's continuing journey and past in the same forth right blunt style my man had thrilled you with but the nitty and often very gritty details strangle the voice from my fingers.

The amount of courage it takes to spew honesty the pleasant and many not so pleasant twists and turns has eluded me for now.  I am so disappointed about that and hope to summon the courage it takes to tell his truth in a way that would make Tracy proud.

Tracy's "Gone Away Party" = Celebration of Life,  will be on Sunday.  As the day looms closer I have very mixed feelings as I have had emotional "mine" bombs (or should I say Mind Bombs) at surprisingly "miner" events which in hind sight I guess I should have seen coming while laughing joyfully through more obviously prickly productions.  So instead of flamboyantly dancing through the fields rejoicing Tracy's uniqueness I am beginning to hesitate, creeping like the impending victim in the horror flicks Tracy so loved.  That is so not ME! I say to myself...and yet, here I am.  The new Me yet undiscovered, Jack in the Boxing emotions and ideas to the events that are rolling at me with Tsunami like speed.  Hold on folks, we are in for a bumpy ride.  Looks like the PollyAmy personality in my Sybil has taken a back seat for now, projecting a new character.  I hope she is a strong one.

Ironically, now that I have gotten enough sleep to begin to function again. it keeps me from sleeping very well.   Another Zig to the ALS Zag.

Time for a little Celebration

Originally we did not plan to have a ceremony to denote Tracy's passing here in Dallas.  Tracy and I had even discussed it a couple times.  Since we didn't socialize much here in Dallas we thought it would make more sense to gather in Peoria, Illinois where he lived most his life and I had lived all my life until ALS hit us, which we plan to do this summer.

But Mr. Popularity has left an impression on so many people that have inquired so wholeheartedly about what plans were for his funeral that we have decided to celebrate Tracy's crazy life here in Dallas at our house in the style we know Tracy would have loved.

A man of many many talents, Tracy had a passion for playing chef and was famous back home for hosting Wednesday Night Feasts so family had an excuse to get together and catch up while test tasting his latest culinary concoctions.  Holidays are so busy no one really gets to just sit around and jaw about things, so this was a great way for family and friends to stay in touch with no pressure.

With that in mind, we will host a casual celebration to enjoy life together in the way Tracy taught us.

If you are interested in coming please contact me on facebook or make a reply here or Email me at amyboettcher@gmail.com.

Thank you all for your love and support.

The Adventure continues.

Whirlwind

It's the day after Halloween.

The Wizard of Oz is a perfect visual depiction of our life- post Tracy.  

A whirlwind of activities and emotions buffet me unexpectedly and expectedly.

So many many many things to think, do, organize, plan while the mantra "there is nothing you HAVE to do" plays like a broken record off loved ones lips and in my mind.

The emotional roller coaster has been slowed by an avalanche of activity.

Some are happy distractions in the form of pampering by family and friends that I have to admit I am greedily enjoying.  Other activities include facing the hard realities and responsibilities in the aftermath of this mandatory life change.  Some are busy work to just keep moving to make sure I still can.

To wash the acid like burning sense of ALS out of my mind I raced to have Respiratory pick up the cough assist machine, Trilogy Tri Pap breathing machine, Humidifier and suction machine- most of which we barely used if at all. To me they felt more like they were sucking the life out of him even tho I know they are designed to do the opposite.  I am so glad to be rid of them.

Today I packed up his clothes and personal items except for those we will craft into clever gifts and memorabilia, reminding myself over and over that those items are not HIM.

But he is here in spirit.

We know this because he went with us to Trick or Treat with the grandkids last night.

We took his wheelchair, lights on

and talked to him and showed him the bounty

the boys collected.

Neighbors awkwardly hugged me

wondering if I had indeed gone over the edge due to the emotional trauma.

I almost felt bad for our distasteful inappropriate display.  Almost....but not quite,

because I know Tracy would have loved making people squirm.

It was so wrong it was right.

Tracy to the End

 I wanted to make Tracy proud and surprise him by being as bold and unreserved as he was about sharing the nitty and gritty of his story but .....I am no Tracy.

I am finding it so difficult to share all the personal emotions and grizzly details of Tracy's last days on this planet in the way Tracy was so adored for.  Yes, I know.  You can't have a preposition at the end of a sentence.  I hear ya, I hear ya....
For which Tracy was so adored.  Better honey? huh.....  Even NOW he nags me about grammar.

Because he would be so proud, I do feel compelled to share the fact that Tracy chose to go to hospice and leave this planet on his own terms.  And I am sure he would want you all to know that he broke ALL records for hanging in longer than anyone they have ever dealt with in his situation and he also used up more than their entire drug supply as it turned out Tracy was incredibly resistant to all the drugs they so generously bestowed upon him, repeatedly.  It seems there was no kryptonite for my Superman.  They said they had never seen anything like it and I doubt they never will again.

It was no surprise to me and I told them that going in.  I knew Tracy would be Tracy to the End.

The Journey Continues

I thought Tracy's passing would be the end of his story....but no.

In typical Tracy fashion his story has taken unexpected twists and turns that I feel I must share in order to do him and his blog justice.

This will take me some times as I am not the prolific writer he was but I am sure he will be guiding, inspiring and spell checking and grammar checking me through every word, thought and expression.

My first thought when I opened his page was- WOW!  Over 141,000 reads!!!  He would be THRILLED!

I did my best to find a way for him to Eye Gaze a last message to me or the kids and to tell ya the truth the first thing he did was check his blog to see how many hits he had.  We did our best to find a way for him to write but it was not meant to be.  But YOU ALL were THAT important to him.  You have kept him alive.  You allowed him to feel like he still mattered and that what he thought felt and said were important. Thank you, thank you, thank you.

In the weeks and months to come I would like to share not only information about Tracy directly but also the physical practical things we learned that allowed us to LIVE this long WITH ALS instead of dying from it each day.

Please, if you know anyone with a chronic neurological disease, please, send them to HealingALS.org.  The people there have healed themselves of ALS and other diseases through common sense (once you know and understand what produces health) methods.  They are there for you in emotional support and practical advice.  They know where to get supplies and what worked for them and why.  They are willing to share all this information because they are JUST LIKE YOU.

If they can do it so can everyone else.

Thank you for the comments and replies. They mean so much.

We love you all.

Tracy in Spirit and now Amy too.

Farewell

Greetings to you, Tracy's faithful blog readers.  This is Rachel, his daughter.  I just want you all to know that he is finally at peace.  He left this world yesterday afternoon without pain or distress.  Thank you for your readership.  He loved sharing with you.  Writing was one of his many, many talents.  One of the few that he could continue as the ALS progressed.
Thank you for bringing him such joy.  

Rally their cause

HealingALS.Org 

Please check out the site and give me your impression. These people, some of whom I've been in personal contact with, are making an extraordinary effort to get their story out. The only way they can succeed is with widespread exposure, which has so far eluded their grasp. I implore my readership to help them break through their impasse by providing the catalyst necessary to grow their fan base. Please read everything, share everything and spread the word. Watch the video, look for me. I'm not quick to promote much of anything, but have a personal connection with this particular group. It is all good.

A note to my neurologist

Dr. Heitzman,

     Many things to address :

Is there any good news attached to the added revenue brought forth by last year's ice Bucket Challenge?

Is there any evidence to support the notion that liver malfunction is a primary culprit associated with the progress of ALS, or is it simply collateral damage?

Can you write a prescription for a cough assist device and the accompanying suction device?

What is the prescription for excess saliva?

A year ago you alluded to a possible connection between nutritional consumption and its effect on the progression of ALS. Does the theory have legs?

Do you believe that politics has hampered the progression of effective research in this country, and if so, do you recommend we search out alternative methods or foreign studies that circumvent pharmaceutical limitations?

If we wait for "the science" to prove or disprove alternative modalities, don't we severely limit scientific research by the very political limitations imposed upon the mainstream research options in America? We were informed by the ALS Association that no money collected from the ice Bucket Challenge would be allocated for research outside of the purview of the FDA. Is the FDA in control of dissemination of all funding for all approved research?

Do you have an opinion on cannabis oil?

What is the significance of recent news about a viral link to ALS?

Thank you

Long winded

It (again) occurs to me that far and away most of my posts look inwardly rather than upon the more important reality of my environmentally affected existence. It is beyond high time I turn my focus outward to overrule the perception that all of my issues are self imposed or isolated from my surrounding influences. A microcosm of all things crucial to my well being stands before me, waiting patiently while I busy myself before a mirror, ignorant and foolish beyond comprehension. Without outer conspiracy there can be no inner resolve, no inner peace. Without life there is only death. It today occurs to me that I am blessed. Let me explain.

First, some peculiarities. The second toe on my left foot tends to mount or spoon my big toe. I have no idea why. On the matter of excess saliva: it is worse when I crave a tenderloin, which is all the time. My breathing problems only occur when I'm short of breath. Coincidence? After a CT scan, numerous X-rays, a very detailed Sonogram and exhaustive spit, blood and urine tests, the concencus is that my liver and other digestive organs are working properly. This is no surprise to me, I've said all along that it is stress that drives my pain. About the feeding tube: on the tube itself are markings every three eighths of an inch. When the tube was freshly inserted, the depth of penetration was one and a half inches. Through my stellarly superior abdomen manipulation technique I'm able to pop and retract the tube by sucking my stomach away from my abdomen wall, thereby pulling the tube inward an additional half inch. It is Amy's unpleasant duty to cinch the rubber washer back to its proper location. I can, and do, belch out of the tube when Amy feeds me. I'm currently trying to blow the cap off the Lopez valve.

Let us move on to........ First, there is Asa, my youngest grandson. He turned two in June. Long before he was born, I pondered whether I would see him. That spring I almost died from sepsis. I didn't die. You probably know that. Not only did I live, but I'm still alive today. I know, you gathered that. I'm thinking that Asa is one of a thousand driving forces that keep me on the planet. He readily talks to me, asking questions I cannot answer, gazing at me with his liquid blue eyes and repeating the question over and over until he gleans an answer in my eyebrows and flutters his lashes in affirmation in acknowledgement well beyond any child of two. Then he goes nutzoid, hops, struts and collapses in a heap just to demonstrate that he's a normal toddler. But we both know the truth.

Nine hundred ninety nine influences to go.

Life and death

Sometimes reality trumps thoughtful processes. Often wishful thinking attempts to derail our natural mechanical rhythms. The resultant cataclysm need not be negative. There can be no battle without the components of both. In my case, the conventional wisdom brought forward to lead the fight is without merit or ability. I've drawn myself through the gauntlet to where I am today, weak and fragile. It is high time I embrace preternatural forces. These include placebo, the best lift in the business, whether it be God, sugar or suggestion. I'm done thinking.

I'm not sure I will survive the necessary process. I'm not sure that I need to. I don't really care. I just ask that I have no more pain. Every time I visit a hospital I leave with the real problem intact. Sure, they focus on what they CAN do. It is not enough any more. This feeding tube is the last for me. It better not break. The little blue pill is working on my gut. The ultrasound, I'm certain, will clarify the condition of my liver and gallbladder. The Trilogy works well.

As of today I'm through with worrying. It is getting me exactly nowhere. I only ask that when the time comes for me to die, it comes quickly and painlessly. I don't want to linger as the masses congregate around my deathbed, pray over me and offer condolences to Amy.

I will write my own obituary because I'm really good at that. (making shit up).

Here it goes

There is no logical reason for me to believe that organ failure has led to my ALS. There is reason to believe that ALS contributes to a variety of malfunctions within the human body. Psychological effects play a significant role in the the course of the disease. Depression of my sort has had a huge impact on my particular condition. It is my belief that the core of ALS in general is as fractured into as many pieces as there are sufferers. There can never be a singular cure to a disease possessing such singularity.

It is nonsensical to try to solve a problem by treating the resultant symptoms without first solving the instigating source. Until the underlying culprit is identified and eliminated, the best we can expect is to keep the boat afloat by bailing water. The leak will persist and eventually outrun any efforts to solve through faulty reasoning.

Do I deny backwards intervention? No. Do I think such intervention is worthless? No.

Healing peripheral issues in order to extend life is almost paramount. If nobody bails, I drown. The truly paramount problem is the leak.

I used the word "nonsensical" improperly. I need this "water bailing" until the leak is fixed. Don't get too wrapped up with the bucket brigade and forget the real riddle to be solved.

Arf!

Just as I expected, my gut issue is due to the physical stress I put upon myself when I'm even the slightest active, ie, trying to keep my head upright while in the van, especially during stop and go traffic or while climbing or descending on the interstate, making an effort to find my balance point while inclined in bed, Amy forever moving me left or right to help me, or any other activity that stresses my mind or already compromised core. Imagine a device attached to your abdomen that forced you to experience crunches or situps day and night. That's what it's like.

Why do I come to this conclusion only after two years? Because I've been in denial of what is obvious. I am decidedly slow in these matters. I should have caught it long ago. Of course I could be wrong- so just to be certain, I will get a sonogram (ultrasound to all you youngsters) on September 28 of my guts, including my liver and gallbladder as a followup to a recent CT scan to be sure that there is no sinister mofo lurking amongst the organs. I'm confident they will find nothing awry.

Other news: I get my feeding tube replaced on September 23rd, Sarah's 36th birthday is on September 24, Rachel turns 34 on October 5th......

Oh, this weekend we host Dodie Magis from Jakarta, Indonesia for classes in Javanese Magnetism. Awesome guy.

Finally, the end. I'll be back.

I failed to mention that today we visited Doctor Rubin, my gut guy, and a regular regimen of a medication I've been taking only when the pain is manifested should help with the spasms, and the primary side effect is a dry mouth. Heavenly for this drooling bulldog!

Hello again

Finally a decent eyegaze accuracy. So much to say, such limited ability. The infuriation is only surpassed by the lack of inflexion in my voice.

I'm going to expound upon my vast, yet prejudiced and very personal experiences with ALS. It reads like a comedic take on Dante's Inferno. It flies in the faces of everybody, inflicted or not, expert or layman.

First, there are no experts. The theories of the most educated compare favorably within their community. The theories of the fringe compare favorably within their community. The truth lies within the ether making up the void between. The term "exact science" is either exploited or ignored. If you adhere to the notion that science has the only answer you are just as blinded as those who don't. It is much more complicated than that. The myriad concepts of onset may all be true. Just as these sentences are abrupt, the answers are marathon. It's good to be back!

So, you want more of me? Demand it! Only your demands keep me in line. If you fade, I fade.

Don't get me started on the lack of progress through the ALS Association. If I'm notified of another "walk for ALS" advertisement I'm going to dump their email. They ignore my requests to offer a link to my blog in their newsletter. Hats off to the MDA, though. They rock.

More later, including my take on liver, silver fillings, adrenal gland fatigue, stress, gut ache, etc.

Sad

God only knows when this post gets up. No internet in our hotel room. Impossible to eyegaze in the light of the library. No, I'm not dead.

Obviously

ALS- what I can tell you.

This particular position applies only to me insomuch as only I can attest to the idiosyncrasies of my personal experiences. Much of this information is derived from "gut" instinct and has little to do with scientific conclusions. I cannot speak for others who find themselves in similar circumstance. They must make their own beds and draw their own conclusions.

Here it is : ALS is the boldest example of insidity. Is crawls inside and systematically destroys all practical functions, one after another, taking bite after bite from the psyche along the way, leaving behind its wake a tattered and beaten shell of a human being.

Or it doesn't.

Despite the physical evidence, I'm not that person. Even if I'm completely destroyed, it is not me, but my body. What I've determined to maintain is not body, but spirit. Looking at me is not enough. You must FEEL me. This is in no way to be confused with faith, or God, or afterlife. That is an entirely different conversation best left for another time. I'm talking internal shit here, not eternal. Huge difference. Huge! You'll have to wait for my explanation. Perhaps for a long time. Don't hold your breath.

I can't do much of anything, but thinking is not even close to the bullseye of my ALS focus, and as such has remained unscathed and unaffected, which Sarah just pointed out kinda sucks. She is both right and wrong, wrong as the sword lashes forward but right when the blade returns to cut the wielder as the double sided weapon provides the ultimate reality check of a clear mind within a wrecked frame.

So, it comes to this : I'm not going to live forever. Maybe infection will kill me this week. ALS is not capable of killing me without my help. In order to do so it must kill my spirit, and it is severely lacking in such skill. I'm determined not to relinquish my edge.

FYI- I don't have Lyme disease, liver problems, anything other than runofthemill issues related to my sedentary lifestyle. I know this to be true because I'm the best informed human on the planet when it comes to me. Bet on it.

The way

Status report.

I'm currently having sleep issues (yeah, I know, you've heard this song before), that may be the result of adrenal gland fatigue. That, or a nagging gut ache. That, or a problem breathing. That, or the fact that I can't move much. That, or medicine side effects. That, or no exercise. That, or bad dreams. That, or something entirely unrelated.

Enough about me. Its always me, me, me. I'm personally Sick of Me!

There is more to that statement than you may think. In the grand scheme of all things important, being sick of yourself can mean that a change is at hand (or suicide), the latter being impossible for folks of my condition. Lets hope I can implement an improvement in my self assessment.

The gut churns and I'm calling it a day.

Ukraine! Hello!

Last week an intriguing thing happened on this blog. For the first time ever, during the course of one week, I had more reads from a foreign country than from the United States.  544 reads from the Ukraine! I'm humbled by their interest. To you in the Ukraine, thank you. Drop me an email to tell me how you found me. Tell me your story. Or just say hello. Tracyboettcher@gmail.com.

Rant part two

Part two.

I don't really have a definitive answer for what works on me. While I don't do near the research that Amy does in the hunt for my cure, I have the (dis)advantage of living with the actual disease. So far, I have seen some progress in the area of diet changes. The caveat is that without the feeding tube, installed by real doctors, all the proper nutrition in the world would not have helped me survive simply because I can't swallow much of anything any more. My weight had dropped precipitously over the past two years and now enough tube food has helped me to gain some of it back.

Without the significant help of the Dallas medical community and my insurance, I would not have :

My Permobil power chair $30000
my Tobii eyegaze computer $18000
my Roho air baffle mattress top $800
my lifting recliner $1500
my PCeye $2500
my Trilogy breathing device $2000 per month
my hospital bed $?
My medicine $1500 or more per month
my Tobii chair mount $1000
my Tobii floor mount $1000
my doctor visits $?
My neurologist visits $?
My pulmonologist visits $?
My feeding tube $18000
all medical services such as emergency room visits, admitting, blood work, home health care, physical therapy, tube food, etc. $?

From the internet:

contact with the ALS community at large. A slew of advice including :

ozone therapy
natural remedies
Lyme theory
liver failure theory
prayer theory
detox theory
cannibus oil
uv light therapy
biomagnetic therapy
coconut oil
liquid magnesium
liquid germanium
massage
probiotics
chicken bone soup
Qijong
electromagnetic therapy
biofeedback therapy
accupuncture
accupressure
stomach enzymes
liver cleanse
reflexology
hypnosis
kinesiology
Edgar Cacy treatments
past life regression
Napoleon Hill
Deanna Protocol
the healing codes
long distance energy conversations

Ok. I'm tired. So you see we gain much from both the medical and holistic communities. They both need each other, and as soon as they dump their prejudices and work together we will see the bullshit from both sides be swept away with the charlatans and the bad practitioners. Only then will there be real progress. Until then, I'm taking advantage of both parties as if the lot of them are children.

So far? I'm still sick. Dang.