ALS- What I Can Tell You

Easy Pivot Disk

2017-11-15T22:52:00.002-06:00

The Easy Pivot Disk

This device was recommended to us by a fellow ALSer and was a fundamental part of our daily lives.

https://www.youtube.com/watch?v=I5LQH6I963I

This piece of equipment allowed us to be independent, travel, keep our dignity and some privacy because it allowed me to be the sole caregiver for Tracy on a daily basis.
With this disk I was able to get Tracy out of bed, in his chair, to the bathroom, in and out of the shower, in and out of the pool, to the doctors, on a cruise ship and in and out of the hospital when 98% of the people around me told me it was impossible.

Now here's the secret to using it.

The trick is to not use your strength. It's about leverage.
Quite honestly this video isn't the best but it does give you a good idea of how it works and it IS very easy to use basically.
I saw people constantly trying to PICK UP their loved one which led them to having to TOSS them into their chair or on the bed because of lack of balance and lack of strength.
This is where so many injuries happen for both caregiver and ALSer.

When they can help you~
If your PAL has some strength in their legs but can't move their feet well, you can start by placing your foot between their feet on the disk. I squat to their level and ask for a hug (meaning they lean towards me). The natural hug position has a nice Pavlov reaction and the person generally naturally turns their head to lay on your shoulder. Their chest comes to yours so the weight is moved to YOUR core, not your back as when you are reaching (which is when problems arise). Once you pull their hips over their ankles, if they have any strength they can either stand or you can pivot as is and there is less distance to move them to sit. The advantage to this position is that you have the power to TWIST the disk with the foot that is ON it and because of the weight you know it's not going to slide anywhere.

About the gait belt that you should use with every lift..... Imagine a guilty sheepish look on my face....

Do as I say- not as I do.... sooo.....I'd love to come up with a really good sound reason why we didn't use the gait belt but....mmmm....the truth is Tracy didn't like it, it was uncomfortable, I was lazy, it wasn't convenient or handy....no good reason.

I looped my elbows under his armpits and grabbed his shirt mostly. Later on I hugged him tight to me and grabbed my own arms.
You should wear a back brace as often as is practical or comfortable as well. They really do help.
If you go down...your PAL does too.

When you do all the work~
The trick to getting someone who has no strength left in their legs up on their feet to turn them on the disk is to lock their knees out with yours.
For this technique the difference is that I placed both my feet outside his ( his feet that are both on the disk) with my left foot on the handle of the disk so it didn't slide and my knees against his knees. This allows you to lock out the knees as you stand. Again I would squat and hug him to me and ask him for a dance. (The dance refers to the small rocking steps to create the turn). His head would lay on my shoulder, being careful to not strain his neck. It became uncomfortable for Tracy to turn his head too far sometimes so his chin would rest on my shoulder on those days. Just be careful not to choke them or stretch the neck too far.
I like to use several small steps instead of just a big swing turn so I always felt I had control over his weight. It's about balance. As their weight goes back to the chair your weight counter balances by squatting and sticking your hind end out. You don't want to have the feeling of toppling on top of them as they sit. Use your Legs not your back.

Rant Warning:
It's incredible to me that NO ONE in the medical field has any interest in using this disk to transfer people. Not the hospitals, doctors offices or clinics. When I insisted I could move my husband at the ALS clinic (especially when I saw how many others were "helped") they seemed truly surprised and nervous that I was confident about moving him on my own. You will hear me criticize a lot of things about our journey but I will admit the people at our clinic really did CARE and were concerned about me moving him or dropping him and they also showed great concern for me and my health.
They did seem impressed at how smoothly it all went when I moved him safely and quickly. Impressed or not no one ever followed thru with getting one for clinic that I know of. (Yes, Tracy. I hear ya, preposition at the end of the sentence....)

I was irritatingly vocal (according to Tracy) about the fact THEY SHOULD have some. The nodded and smiled and never did get any, nor did the ER we visited way too many times.

WHY??? You would think the insurance companies would PAY to have every nursing home and hospital have them just to save on lawsuits from people being dropped or mishandled.
The way they tossed Tracy around in the ER was criminal and I threatened more than one of them if they dared to think about moving him after seeing their complete lack of knowledge or caring.
(Even the really really big guys recognized THAT look of a person pushed to the edge and they believed me and rarely challenged me after that. I highly recommend you use your determination to protect your loved ones if you get the sense staff is in any way incompetent. I found that happened shockingly often).

If you read this and do have an actual understanding of how the system works and why they are not open to recommending this disk I really do want to hear your opinions.
It must have to do with how bids for insurance coverage go. How do they decide what is covered and what is not and by which companies?

I would have loved to have this Disk presented as an equipment option FIRST before they talked about Hoyer Lifts, wheelchairs and breathing machines. How do we make that happen?

Believe it or not

2017-11-15T20:36:00.000-06:00

Believe it or not

So today's post is about belief which to me ties directly into hope which to me ties directly to your chances of surviving any chronic disease diagnosis.

To me this is at the core of one of the biggest problems of the Healing ALS journey.

From the moment you are diagnosed you are told repeatedly-

There is NO HOPE.

As a certified hypnotist I will tell you that having a highly respected person of authority make a shocking statement that is emotionally charged and plays on your worst fears and then repeating - there is NO HOPE over and over again is Hypnosis 101 in the most harmful way.

It's the basic formula for any brainwashing recipe and it is used in cults commonly.

Look it up.

Don't BELIEVE anything I say.

Look it all up yourself and make sure you are finding what YOU believe to be true and not just taking what you hear or see as fact.

If you have NO HOPE then you will not try to heal. How can you achieve a goal you are not trying to reach?

Doctors make sure they do not give you False Hope for they fear they could be sued.

Doctors do NOT want to be sued.

The term false hope seems to be an oxymoron.

You either have hope=the feeling that what is wanted can be had or that events will turn out for the best or you don't.

False hope means what you believe to be achievable is in direct opposition to another person's opinion that many times they believe to be fact. They BELIEVE there is no hope. They say it is a FACT.

This brings the question to light-what is a FACT?

Fact-(according to 3 different dictionary sources) a thing that is known or proved to be true, something that actually exists; reality; truth. a statement that is true or can be proved with evidence.

In these definitions -WHO is doing the proving? What is their motivation? What evidence are they willing to consider or not consider?

My definition of fact is information some believe to be true at this moment. Because let's face it, there are people still debating if the Earth is flat or whether we really went to the moon. We thought Bill Cosby was a good guy and that blood letting and leaches were a good avenue to treat disease.

Facts change all the time with the amount of knowledge and information we are exposed to and have time to consider. Facts clearly are also often manipulated for political or financial gain.

(That's another whole ball of wax.)

Known as Gus-isms, my father has many wonderful words of wisdom that make us ponder.

There are still some I don't have a clue what they mean but this one I have found to be very true.

Just because you don't understand me doesn't make me wrong.

Event, item of information, or state of affairs existing, observed, or known to have happened, and which is confirmed or validated to such an extent that it is considered 'reality.'

Read more: http://www.businessdictionary.com/definition/fact.html

So- in general, doctors say to those who are looking for options for healing ALS that it's Impossible.

When you have experienced the Impossible (being diagnosed with ALS having never been sick in your life until that point, as one example) in my experience, anything then becomes possible.

Below are a couple links to the Impossible being done on a daily basis.

Tracy and I have worked with both these men directly. They do EXACTLY what they say and show they can do. It's shocking. It's life altering.
It changes your perception of reality.

We are told these things are IMPOSSIBLE and yet- we experienced the impossible ourselves on more than one occasion. We spoke to many others with documented serious and life threatening illnesses who were healed after western medicine had failed and given up on them. This includes animals as well as humans taking the Placebo Effect out of the equation for me.

You can debate HOW you BELIEVE it's being done or you might want to consider the answers those who are doing it give. But it IS happening.

How does choosing to believe or not believe impact your life?

What consequence or judgement would you have to deal with if you chose to believe?

Open your mind to new possibilities and enjoy!!!

Fun with Master Zhou-

This wonderful little 83 year old dynamo was absolutely incredible and I look forward to going back and visiting him again some day.

He created movement and strength in Tracy's legs that was not there before. After being wheelchair bound for many months Tracy was able to stand for a short time and even took 4 steps with help and then backwards 4 steps. Tracy had a frozen shoulder issue Master Zhou loosened.

I have videos that show a bit of Master working with Tracy. I'll try to figure out how to load them on here. (Talk about a miracle!!)

Without context it's really hard to understand how much movement he gained while Master worked on him.

He tells you to say HOT if things get too intense. I can not express clearly enough how HOT things get. I mean red hot poker hot. His energy starts out warm and then you hear the sizzle on the foil and you think, I'm ok, I'm ok....then it quickly becomes clear you are absolutely going to say HOT so he will move the towel and have him quit waving his hand over you for a second.

We spoke with many he had healed who volunteer to help him now.

There are many videos on You Tube of him going back many years- Universities have studied him (which was actually one of the reasons I chose to give him a chance) as well as being on TV shows.

http://www.masterzhou.com/

In this first video start at about 35 minutes to see Master Zhou at work. This is the same room, in the same building, working with the same staff as when we were there.

https://video.search.yahoo.com/yhs/search?fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk&p=youtube+master+zhou+healing#id=4&vid=3f92f68b1866f0ac079488f231a4e19a&action=view

I just like this one so I'm including it.

https://www.youtube.com/watch?v=66oxwbFEEys

This is fun- Stan Lee's Super Human's

https://video.search.yahoo.com/yhs/search?fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk&p=youtube+master+zhou+healing#id=12&vid=9a8708ee73496d3b678c351af9af8eac&action=view

I like Stan's last statement at the end of this video.

You can find all sorts of fun videos of Zhou from That's Incredible and Ripley's Believe it or not...

Look around. I think it helps unbrainwash you when you see so many situations Master Zhou is in where people are looking to discount what he does as a hoax and can't.

Talk about Miracles!!!

If you knew Tracy or his blog at all then you know he was not a big fan of organized religion.

It was a sign of how much he loved me to agree to skype and then eventually meet and have appointments with Dr. Nemeh.

Dr Nemeh is a real medical doctor who just happens to also be able to do what he considers religious healings. He gave us great sound medical advice that helped us so much.

Now, I know how nuts this is going to sound but I am gonna tell the truth anyway.

I saw in my research that this guy has an incredible success rate during his healing services. Being a hypnotist I thought- perhaps power of suggestion as much as power of prayer (which I do absolutely believe in as well- again another whole ball of blog post).

Over skype he improved Tracy's panic and anxiety that was keeping either of us from having any kind of quality of life at that time. He improved Tracy's swallowing which had become a very dire situation. Tracy's choking and gasping improved greatly after the very first meeting. He gave us so much good sound, practical, HEALTH information that helped.

On other visits there was always some kind of improvement but the bottom line was- Tracy really liked him. He liked and respected this man who was so so different from him.

Dr. Nemeh is a quiet, gentle man.

I took Tracy to a religious healing service (talk about suffering for Tracy!!! He was praying that lightning bolt would come down and save him right then and there). What was REALLY surprising is that I am the one who got a healing!!

They prayed over Tracy. I thought they were done and then they moved to me. Now remember there is a whole church full of people with REAL problems hoping for healing so of course I felt instantly guilty (yep, Cathoic up bringing). I had not told ANYONE. NO ONE that my back was out because I was Tracy's full time caregiver. I had in the past tried to get help in a couple times when I had back problems before and it was always a disaster. More work for me- they couldn't do what I needed them to and I was out $75. So, it had been a long day on that pew waiting for our turn but who was I to complain when Tracy was sitting right there. (Perspective on suffering). They do their thing, a hand on the front and back of me, gently praying then POP!!! I feel it in my back. Dr. quietly says mmmhhhmmm....then moves on.

At this point I am just stunned. We go back to our place on the pew and I test and test and test my back. I twist and turn. Nothing. No problem. I think- power of suggestion (logical, skeptical me). I think in a few minutes it could wear off. Then I think- what am I doing!? I am looking a gift God in the mouth! I am grateful and thankful.

Now this is still HILARIOUS to me.

Dr. Nemeh is a very quiet respectful gentle guy.

We go down the line waiting our turn to thank him as we leave the church.

When I get to him I am still flabbergasted!

I tell him he healed my back!! I am all animated and shocked. He looks me straight in the eye and with a "look" of DUH he says I KNOW, and with that gentle smile says what do you think I am doing up there all day! ahahahahahahahahaaa.a..a

It was soooo out of character for him. But he takes what he does as a matter of course.

Yes, Miracles Happen.

(It's the name of his book).

Dr. Issam Nemeh-

http://drnemeh.com/

https://video.search.yahoo.com/yhs/search;_ylt=AwrDQykqjAhaOT0Ahcc0nIlQ;_ylu=X3oDMTBncGdyMzQ0BHNlYwNzZWFyY2gEdnRpZAM-;_ylc=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?gprid=s8Cr_wCdSTyRafNHlLcuKA&pvid=JM58yzEwLjFQuLGCVWagQQM2MjYwMgAAAADsxxqG&p=dr+issam+nemeh+faith+healer&ei=UTF-8&fr2=p%3As%2Cv%3Av%2Cm%3Asa&fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk#id=2&vid=826c2db67296c39350359f30b906aa91&action=view

Who do you believe?

The doctors with zero successes?

Or the healers with many many documented successes?

The Healer

2017-11-07T21:50:00.004-06:00

I apologize ahead of time because I am posting this in typical Tracy fashion.

I have not warned friends or family about what I am about to post and it's likely to make people uncomfortable.

Perhaps it's because I am truly being inspired by my dear dead husband and I don't want anyone to stop me so I will do it now and ask forgiveness (or not) later.

Perhaps this post is prompted by the fact I am experiencing plague like symptoms

(ok, I just have a cold but it feels really bad)

and am feeling momentarily that there is a very small chance I could actually meet my demise and I would not like to leave this planet without sharing what could be helpful to those in the deep dark trenches of the madness called ALS diagnosis-

which is a totally different subject than

HAVING ALS.

(To be discussed in another post).

(Yes, I have taken medicine at the prompting of concerned friends and family and this is most likely why I am suddenly spewing my opinions like confetti at a kids party. Remember that people, the next time you insist I should take drugs to get over my illness.

It's called Side Effects!!

Now you get to share them too. )

It's been 2 years since Tracy left the planet,

Oct. 27th of this year, 2017

and in some ways it seems like just days ago and in others it seems like he's been gone an eternity.

I had great expectations of helping heal Tracy and then sharing what we learned with the world.

That didn't work out as I had planned.

Plan B is to gather what is left of me and prove to the world that there IS hope and there ARE things those diagnosed with ALS can do to improve their quality of life and perhaps lengthen it and even slow or stop symptoms, and yes, in some rare occasions even reverse them.

I am passionate about this because of our experiences, so I KNOW it's real and true and that there are over 25 other people that I know of, that HAVE ALREADY

healed themselves, to varying degrees, meaning living a longer, happy productive life, being able to walk and talk and work.

The old Amy would have blazed a trail immediately, knocking doctors ass end over tea kettle and shouting from the roof tops until someone finally listened.

As the Much OLDER Amy, I have chosen to not do that (yet) because of the whole- you are just a distraught, bitter, soon to be widow, in denial of the truth, speech I was given repeatedly throughout our experiences dealing with the ALS medical community.

And the HealingALS.org people who politely, calmly conveyed their opinions, that if I want to bang my head against that brick wall that is my right to do so but all I will get is a headache.

But- now is the time!

I figure I have held my tongue for 2 years and that should be about as long as anyone needs to, to prove to people,

(who probably aren't going to listen anyway),

that my opinions (or facts) are not driven by emotions alone but by experience, knowledge, education and investigation.

http://www.elle.com/beauty/makeup-skin-care/news/a30626/energy-healer-charlie-goldsmith/

I post this link above because the questions Charlie Goldsmith, Energy Healer, is asking and the frustrations he voices are exactly what I ran into trying to convince ANY REAL doctor dealing with Tracy to listen to what I had to say when it comes to anything remotely close to discussions of health or healing those diagnosed with ALS.

This young man is on a quest to try to get any medical persons to be willing to investigate what he is doing to heal people. He has pages and pages of testimonials and now has an impressive little TV pilot.

He was astounded to find out that NO ONE in the medical world is interested.

He was told by a medical doctor no one will ever fund research for that.

It doesn't matter if it's true or not.

That is what I have found to be true with ALS as well.

It doesn't matter what I am telling them because if I am right- it does NOT HELP THEM at all if they are selling drugs and what we need is HEALTHY LIVING concepts.

This very harsh reality is still one of the hardest things for me to deal with in our 4 1/2 year journey down the ALS wormhole and the subsequent 2 years.

It is the opinion, as I understand it, that the HealingALS.org people ( the group that has over 25 long term survivors compared to the medical world's Millions of dollars and ZERO successes) are going to set about helping those people lucky enough to find them, smart enough to understand what they are saying, energetic enough to be able to follow thru, financially sound enough to afford healthy living concepts and with enough family support to ward off those who are trying to save them from their sure delusions. They believe eventually there will be enough proof that what they are doing is working because their numbers will grow to the point that the PUBLIC will figure out the truth.

That being- the medical world is the one very misinformed and misleading many who can be helped, at least in some ways. The public will make the change happen and the medical world will be forced to jump on board.

And I believe that they are right.

But how long will that take and how many more people will needlessly suffer and die while we wait for the world to become unbrainwashed?

I am absolutely 100% in support of everything HealingALS.org

is doing and the wonderful, generous, amazingly dedicated people who work every single day to help those who are suffering this diagnosis and disease.

But- I am impatient. I am warn out.

I suffer every day knowing that there are people, just like Tracy and I, who are being given extremely harmful, dangerous and just plain wrong information by the medical world and no one is holding them accountable.

I am told repeatedly- it's not the doctors fault. They are just doing what they are told. How could they possibly go against their peers?

What real proof do I have anyway?

What proof does anyone need really?

What would change YOUR mind?

What would change YOUR actions?

This is not a rhetorical question. This is a real, honest, passionate cry to any of you who are reading this post to share it and to give me a response.

Now is the time.

Deja vu

2017-08-17T02:42:00.000-05:00

Here I go again.

Although this post may be a repeat in some ways I think to UNbrainwash people there needs to be repetition~ this coming from a certified hypnotist.

Remember-YOU are responsible for YOUR health.

If you have a serious health issue and you are told repeatedly by the medical world that THEY have no answers for you, that the situation is hopeless and there is NO help for you and you should get your affairs in order because you are not long for this planet or that your life will always include pain and suffering or that the ONLY choice for healing MUST be pharmaceutical~ STOP. STOP right there and realize what they are REALLY telling you.

They are saying THEY- standard western medical understanding, has no answer. That does not mean- there is no other answer. It means there is no PILL they can give you to improve your health- and that even if there is, the side effects may be worse than the disease.

To become healthy again you may need to consider that you may have to begin living an EXTREMELY HEALTHY life, mentally, physically and emotionally. It seems too basic to actually be taken as a serious solution to serious health issues so many say to me. Once you experience a positive change and then begin to do the research on WHY it's working it begins to seem more common sense instead of a ridiculous whim. To heal you have to give your mind, body and spirit as much GOOD and eliminate the things that stress your mind and body that put it in Fight and Flight Mode.

What prompted this post is my trip back home and a meeting with yet another person who echoed so much of Tracy's and my journey through the medical world.

On my trip home from Illinois I was lucky enough to get invited to a party where I met a wonderful young woman who openly shared her health (or lack there of) journey, that has been a very long 8+ years. As she described her diagnosis and misdiagnosis, the discouragement, misinformation, poisoning of her mind, spirit and body, she used the EXACT same words that were given to us throughout our journey. She was told she would die and there was NO HOPE for healing. At that point she left the hospital against their advice, to make use of the little time, painful as it was, she was told she had left.

She began her journey on her own, into health and understanding, experimenting and learning as she went. Now 8 years later she is still here. She has improved her health in ways that baffle the doctors. It wasn't a magic pill or miracle cure. She did things that IMPROVED HER QUALITY OF LIFE which has lengthened her life. This idea is SO SO important!

If you believe there is no hope then you don't even try to heal. If you don't try, you have no chance of improving. It's a self fulfilling prophecy to tell people they are in denial and delusional for even considering focusing on health and healing instead of dying. That negative diagnosis is a SOURCE of the fatality they predict.
What would the numbers be if people were told- let's work towards the healthiest, happiest life you can imagine, no matter how long you believe that life will be, and just see what happens?

One of my goals for this trip back home, was to get a fresh start, let go of the past, get a new focus, move forward, reconnect with my passions and friends....but again- here I am, presented with another story so similar to ours that I just can't ignore the message. I just seem to keep getting pulled back into this subject of the fleecing of America when it comes to Health.

Drugs do NOT create health. Drugs KILL off BAD things (that many many times save our lives), or trick the mind or body into changing it's direction of action (which is absolutely necessary for many illnesses). But Drugs don't HEAL. Your Body HEALS itself given the proper resources.
I was told by our pain specialist doctor (who ONLY prescribed drugs to deal with pain) that ALL DRUGS are bad for the body because they are not natural to the body. That is the definition of a drug.

If you want to be healthy you need to understand what creates health. That can be different for each person. Letting go of toxic ideas, relationships and yes, foods- make for a happier healthier life whether you live for an extra day, week or years. Adding mega nutrition adds strength to continue your journey and help switch off the flight and flight response that allows you to begin the healing process instead of being stuck in survival mode.

You think having ALS is the worst thing in the world that can happen to you. Let me tell you for a fact- having high blood pressure, constipation, muscle spasms, diabetes on TOP of ALS is worse and we healed ALL of those things with diet, nutrition and stress management.

SHARE this message with those in need. Give them HOPE. There is no such thing as False Hope.

It's happening

2017-04-21T00:23:00.002-05:00

As you have noticed I haven't written from Tracy's Blog in quite a while.

The truth is - I was tired of hearing myself whine and I was pretty sure you were too.

I have big plans to list every positive person, helpful piece of equipment, recipe and doctor that helped us on our journey

but- getting a life, that does not include Tracy, has turned out to be much more time consuming and complicated than just living without the one you love.

I'm often embarrassed at my lack of intestinal fortitude when it comes to following through with writing a book or meeting with doctors.

It's a constant tight rope act for me to continue to keep one foot in the real world and one in the world I want to create.

So when I got this wonderful news I couldn't wait to get on here and share it.

I just heard the day before yesterday from Linda Paulhus who is starting a medical center to help those with ALS. She is working on getting funding. She knows the ALS journey and she also knows the TRUTH- that people CAN be helped. It ISN'T a hopeless forgone conclusion that diagnosis means death.

Then I just heard tonight from Tish, the head of HealingALS.org https://healingals.org/ organization, that they have received a promise of donation to fund the cost of completing the Documentary highlighting over 20 people that have been diagnosed with ALS that have slowed or stopped progression or even reversed their symptoms.

Those interviewed in this film are living breathing humans that were given the SAME death sentence as ALL those with ALS. They refused to give up before they even tried to heal. Then the continued to NOT give up. Now they are telling OTHERS - Do NOT give up!!! And what they did to overcome their ALS Death sentence. They were surprised to find others who had healed using nearly the SAME methods.

So, I have real joy in my heart knowing that the TRUTH is going to get out soon.

The book is almost completed. They have webinars that they will share the information they have gathered. They have a conference called where they discuss actual HEALTH ideas that anyone is allowed to participate in. They have short interview that will be on You Tube.

Several of these ALS warriors have already written books of their own.

Together we will unite to make a statement that CAN NOT be ignored. No more doctors nonchalantly spouting that there is NO PROOF. No more half truths and misguided misinformation.

The truth is coming....

I wonder how it will change the lives of those without ALS. Those who will realize that those of us in the trenches aren't making up wishful fairy tales or in denial or trying to scam people as I was told so often.

The world is about to become a much better place thanks to a handful of people who WOULD NOT GIVE UP.

How do I know all this?

Because these people took the time to CALL ME more than a year AFTER the death of my husband. They weren't looking to GET anything FROM me. They knew I would be happy and so she called to share her joy with me out of the kindness of her heart.

The people who are changing the world in this amazing way have done so out of their OWN POCKETS. They have taken their OWN TIME to make this miracle.

My thanks to my relentless heroes.

HealingALS.org

Donate now.

The money will go to helping share the TRUTH.

The Basics

2017-03-24T08:54:00.002-05:00

Basics in health that effect EVERY ASPECT of the Quality of your Life-
The breath.
Clean water.
Mental/emotional/spiritual peace.
Nutrition
Movement
Sunlight

It's a very confusing time for me.
I see others on my same journey and timeline seeming to do well and move forward.
I am moving, one foot in front of the other. No idea what direction.

In the past I had absolutely no care what direction I was going because I followed whatever wonderful, beautiful shiny thing that was presented to me at that moment. I had the freedom to do that thanks to my husband and family and friends.

Now I feel a great responsibility to make a decision (or many). To choose a path.
I'm told or at least impressed by others with the idea that in order to move forward you have to let go of the past. Not forget it, but release it, let go of some of the weight that holds me in place.
When I am stronger I can go back and pick it back up if I choose. Seems logical. I make that attempt. It takes me many many tries. I see no failure until I give up and I'm not good at that either.

Being throw into the shocking cold pool of "unsolvable health issues", weighted down by negativity and hopelessness that is heaped upon us at every turn from the first words of diagnosis to the last breath, I learned so much.

I learned that because 1 or 2 or 10 people or even 100 people say something is unsolvable does not mean it is unsolvable. It means THEY don't know how to solve that problem. It means THEY haven't continued to search for the answers. They have given up and accepted the answers that were handed to them probably by someone else who got them from someone else who read it in a journal written by someone else. Someone we don't know. Someone whose motivations might possibly founded on and education tainted by funding to look in ONE direction.

Are these researchers good hearted, honest, intelligent, well meaning people. Most likely.
In the beginning I trusted all of those people and their opinions to be much more sound and important than mine. But what I found out by experience is that when what they said made absolutely NO SENSE TO ME I assumed I just couldn't conceive of their brilliance in progressive medical technology so I did MY research. As I began to put pieces together I knew less and less because more and more things made NO SENSE to me. UNTIL.... I found people like me. People who went out on their own to figure things out because we couldn't understand what we were being told.
What we ALL have in common is the understanding that WE are RESPONSIBLE for OUR own HEALTH. But what does THAT mean?

It means our health is as unique as our fingerprints and children. There are some basics that apply to everyone. Beyond that it is up to US to test everything on and for ourselves. Anyone telling you they have a one pill fits all clearly has NO IDEA about HEALTH. They know about THAT pill.
Because they don't have a PILL to fix you does not mean there aren't things that can help you.

Did I say CURE you? NO. I did not. You can NOT CURE life. Life is terminal. You are born knowing you are going to DIE of it. Do we CHOOSE to look at life that way? Not most people. There are some who do and doctors give them Drugs to solve that problem (called depression, anxiety, phobias....). But most people spout positive affirmations and say live life to the fullest! NOW is the time! Enjoy what you've got before it's gone!!

With that in mind- I was told over and over again about my insanity and denial in working to improve Tracy's health in ANY way. The mantra- that's NOT going to CURE him as they rolled their eyes at me plays over and over in my memory of the past 5 years. Even tho I have pictures, phone numbers, emails and memories of people who I now consider friends- who did EXACTLY THAT.

But instead of fighting that brick wall for now I want to say to anyone who is fighting a chronic health issue- no matter what the diagnosis- step back for a minute. Leave the circle of thinking that spirals you down to your certain doom.

Every day is a day. A day with ALS or any other chronic disease SUCKS. PollyAmy can say make the best of it. But to me what that actually means is - a day with ALS AND diabetes and leg cramps and high blood pressure and constipation and and and is WORSE. Healthy athletes who have these symptoms DO something about them. They don't say oh well- some day I am gonna die.

ANY issue you can heal makes the rest of your system stronger is a GOOD idea. It adds to the quality of your life- which is the # 1 cause of death among ALS and other diseases.

ALL we have is the QUALITY of Life.

If doctors say there are NO answers then WHY do we continue to listen to them tell us there are NO answers when are searching for them? It makes no sense does it?
If a guy told you he can not fix your car because he works on boats and they have motors too would you throw your car away? And yet we throw our lives away on their attitudes, opinions and advice.

Basics in health that effect EVERY ASPECT of the Quality of your Life-
The breath.
Clean water.
Mental/emotional/spiritual peace.
Nutrition
Movement
Sunlight

More Proof

2017-02-25T20:15:00.005-06:00

This is yet ANOTHER ALSer who chose to fight instead of go home and die as she was told.
She has already had 3 EXTRA years of life according to what doctors told her because She CHOSE to at least TRY to heal. That is called LIVING each day instead of Dying each day as was beaten into us over and over again at ALS clinic. This is where we were encouraged to go so they can check off little boxes showing you how fast you should be dying while staring at a room full of miserable people in worse shape than you so you could SEE your future. AKA Hell.
For the record Tracy was bitten by 2 infected ticks that carried Lyme Disease and was treated immediately upon showing the bruised target typical of Lyme Disease many years ago. Doctors REFUSED to believe it was Lyme because we lived in Illinois and they didn't believe there were infected ticks there. Tracy INSISTED the doctor go get a medical journal as we had visited Arkansas and DID pick ticks daily while there. Tracy was right. What are the chances it played no part in ALS? Doctors will tell you the two are unrelated and there is no proof. Those who have HEALED their ALS symptoms will insist otherwise.

Here is what she said-------

Well, today marks the Four Year Anniversary of my "death". Four years ago today, about this time, some ill-informed doctor told me to get my affairs in order because I had fast progressing ALS and would be dead within a year. I went home, spent two months sad and depressed, then got mad and started researching my disease and came across shackel.org, a guy who cured himself of ALS. Got madder still at the allopathic world and decided I was going to fight this disease and stopped the progression at the tops of my legs for three years with massive amounts of supplements. This past year I lost my torso and am losing my arms, hands, and my breathing has started to decline due to not treating it as aggressively. I am severely malnourished due to malabsorption of nutrients and no doctor will even look at my tests, much less treat me for it. I speak slower now. So I decided to test for heavy metals finally and those tests are enroute to my house right now. I recently started GcMAF and cell membrane rebuilders and a strong probiotic. I'm very tired of fighting and really want to go home now, but I'm not giving up. I still FULLY believe that ALS is curable AND reversible if you can find out what is wrong and treat it in a timely, efficient manner. My ALS Naturally group has several members getting better and is over 1700 members strong. Word is getting out, hope is getting out, people are demanding treatment instead of being sent home to die. More and more are finding Lyme Disease upon independent lab testing outside of normal hospital lab testing. My hope lies solely in the will of God for me. I look forward to the impending Rapture of the Church. God willing, I will be here for it.

Strange things Brewing

2017-02-25T19:50:00.000-06:00

You would think after more than a year of "moving on" I would be about moved on by now, but it seems the Universe has other plans for me.

Every time I choose to let go of the past to focus on the future there is this rush of coincidences involving health issues, medical questions, friends of friends in need, new ALSers, MSers, and all the rest of the alpabet- sers, who for some reason, contact me all at the same time, to get advice or equipment or ask for help in some way.

I have made myself ridiculously busy at work, that I absolutely LOVE, in hopes I can find the spark in my soul again and focus on life instead of the stress of illness and loss.

My job is more than I could have dreamed of getting to do especially at this point in my life. I play with the grandboys as much as possible and am so so grateful to be here with them. And yet, it certainly does not replace or actually even distract me from my loss (which always seems like a funny phrase cause I know right where I put Tracy-he's not lost as much as not here).

In the course of a couple days I got an Email from a heroic ALSer who was able to reverse his symptoms and is back to walking and talking and golfing and working when he could not make it up 10 stairs for lack of oxygen and muscle weakness at one point. He sent me his chapter to Healing ALS -which will go in a book written about more than 20 people, ALL of whom have reversed their symptoms by

Extreme Healthy Living practices.

I can't wait until they publish their documentary film too. We just need $130,000 to save so many lives and so much misery. I wish we could use some Ice Bucket money for that. I'm still working on it. I figure I will work to earn enough money to give it to them myself unless I find a generous soul who will donate it and save thousands and thousands of families from the hellish diagnosis and subsequent life style foisted upon us.

Then I got a phone call late at night from a cousin whose sister has MS she has been dealing with for 35 or more years who needed info on mobility and pain management. Then there is a couple with ALS struggling to find a way to take care of each other with no help from anyone, not because they haven't asked, but because family and society said No. Then I got a text message of support, out of the blue, from a gal who proceeded me in the very journey I am on. I mean almost exactly the same journey. We barely know each other and yet- we know EXACTLY what the other is dealing with, making us sisters in a weirdly widowed way. Then there is my ALS warrior friend who keeps me going in a fun irreverent style. We are reluctant Dead Spouse Society members who can share ANYTHING because we have been through Everything.

Then there are the random requests by friends of friends who hope that I might have some information to help their family or friends get through the shock of recent diagnosis.

It all comes pouring in at one time just as I choose to take a breath and try to refocus on a "normal life", whatever that is.

Now, before you say- no...it's just a matter of perception like when you get pregnant you suddenly notice all the preggoes or you get a new red car and everyone seems to magically start copying you, -I'm telling ya it's not like that.

It's like I try to add more and more fun stuff that I like to do and takes up my time so my life will be filled with joyful stuff instead of getting my knickers in a knot about medical BS and issues my ranting most certainly will never change (so I am told). Then, suddenly, like whiplash there is this faucet effect where requests and calls and texts and emails come rolling in all at one time to remind me there is NO getting out of the ALS life.

Once in,- there is NO OUT.

This is a weird place to be because I don't really WANT out. I know that sounds weird. What I really want to do is rant and bitch and be a pain in the ass to those blocking the success of those trying to get the REAL TRUTH out there. I want people to invest in reasonably priced practical mobility equipment development so those of us living on 2 hours sleep for years don't have to find time to run to the Dollar Store to find things to hot glue together in order to make our loved ones comfortable. What I want is for Doctors to say- hell, I don't know. We don't have medicine for that so good luck- go try anything and everything on the planet and let us know what works for you, and by the way- here is a counselor or therapist to help you deal with this giant unplanned life change. What I want is to be able to share information without STILL hearing the words "in denial","cruel woman" and poor sap.

But I don't want to be THAT person. The one everyone runs away from the moment I enter the room for fear I am gonna talk about uncomfortable issues unendingly. I want to talk about fun things like grand kids, music and food too as in also, along with changing the world and saving lives and ending unnecessary suffering.

Sorry folks. I have really really tried to stay on the fringes, sharing with those who search me out. I've tried to keep health chat to a minimum and post all the cookies and red meat I eat so you will see that I am just like you. Some days I eat well, some days I don't. But the difference now is that I KNOW when I wake up a swollen mess and hungry in the morning I DID IT TO MYSELF. It's not old age or bad genetics as I have been told my whole life. It's poisoned food, too much stress, lack of schedule and not enough sleep. And when I make myself sick enough I then improve my diet until I feel better or fit back into clothes I need to wear.

I have had so so many people tell me I just MUST write a book- which is hilarious to me for so many reasons, so I just might do it because I do love to laugh. I do think it's a good idea because our journey was so unique in many ways and what we found out too late in the game may help others beat the odds or at the very least, give hope which is healing on many levels, even if it's not a CURE.

So, if ya don't like it- bitch at the Universe about it, because I have given it my all to be out of the battle but it looks like the Universe put me here to be a pain in the ass until things are changed to give those diagnosed with ALS a fighting chance.

Now back to your regularly scheduled program.

Finding Balance

2017-01-06T20:49:00.000-06:00

With the new year I am doing my best to set new goals.

What do I leave behind and what do I nurture and grow?

It's an odd place to be knowing I can't live in the past but not

wanting to forget it either.

I loved my past.

My husband, my art, my crazy new age energy gurus, my fun loving,

rough around the edges, out of the box friends.

Now ALS is part of my past as well....or is it?

When Tracy and I were newly diagnosed we spoke to people who

were in the ALS Association for more than 16 years after the passing of their loved

ones and I thought- how?

How could they remain in the trenches that long?

I remember thinking, if we (because I truly believed we would always be WE)

ever get past all this, there is no way I would continue to stay in the absolute

WORST situation, way beyond what even my wild imagination could conjure up,

we have ever lived through. And yet....here I am.

I have come to find out there is NO leaving.

It's a part of us like shrapnel.

It's gotten to be nearly daily now that someone contacts me to ask a health, medical, mobility,

fund raising, hypnosis, family crisis, supplement, energy work, or personal question related to our journey. This seems most incredible to me since I knew absolutely NOTHING about health or medicine or being an adult or how to use an Iphone or an ATM when we were diagnosed.

I assure them I do NOT have all the answers and many of them I do have, quite possibly could be wrong, but I am willing to share what we did and discovered in hopes they will be a step ahead of where we were. Perhaps that one step could be the one they need to get out of the pit we are all are so casually tossed into at diagnosis.

It seems that no matter what my decisions are about my future, the Universe keeps placing situations and people in front of me that draw me back into that emotional vortex. Those who are living my exact situation that have kept in touch with me over this past year strengthen my confidence that -

no, I did not make all this up. No, I wasn't in denial. I wasn't scammed or naive.

What I learned IS REAL.

It is Fact.

And yes, it goes against the standard information out there that has been and continues to be presented as fact and our only option.

How can I just let all that go knowing others suffer daily for no good reason?

When you are drowning in depression and stress and fear and someone offers you ANY help,

it's like getting that desperately needed gasp of air.

It is pounded into us that a PILL is the ONLY hope and anything but THAT is worthless.

I am here to tell you that is absolutely a lie.

I am here to say, and continue saying, whether anyone is listening or not,

that the caring and sharing of information, right, wrong or unproven IS

healing on so many levels.

I continue to appreciate every comment, greeting card, phone

call, bad joke, text, message, email, gift card, prayer and actual paper note we received and continue to receive.

Never underestimate the healing power of kindness.

And I don't mean in just the Hallmark isn't that nice way.

I mean in a real tangible, being on the planet longer, living a healthier,

happier life kind of way.

Because the medical world won't quantify that in a research study

does not mean it isn't true. It means that there is no money to fund it's research.

I really, really don't want to be one of THOSE people.

"We" know what you think even if you don't say it.

You are afraid if you ask how we are doing we might ramble on and

actually tell you, in great detail. You feel guilty to eat junk food in front of

us for fear of judgement and nutritional lectures.

And for the love of God PLEASE don't get us

started on the food and medical industry and conspiracy!!

I think it's about balance.

Balance between our old life and my new life.

Balance between living and reliving.

The lecture I spit at the youth condescending to me about getting comfortable with Progress, generally referring to spending money on more electronic contraptions that are programmed to be outdated in 2 years, and Change I think is appropriate here as well.

Change: to leave behind (throw out) what you were doing or had in order to do or have something new.

(This is the mantra of our new society).

Progress: To keep the useful techniques and knowledge gained from the past and building on those in order to improve your life with ADDED experience, techniques, items or knowledge.

I choose to not just change my life but to progress thru my life.

HealingALS.org

Donate now so others can live.

Horrible but Hilarious

2016-12-28T23:42:00.000-06:00

In our ALS Journey there were so so many things to deal with that there was absolutely NO way to be prepared for. As horrible as many of them were to deal with there were some absolutely Hilarious ones too.

One of the great things about dealing with those in the ALS trenches is their blunt honesty that comes from not having any time to waste and no energy to filter or worry about being PC.

Many horrifying situations that were or could have been life threatening (to only deathly humiliating) are shared among those who "get it" in our world with a great laugh.

Occasionally one of us has a verbal slip, either by accident or on purpose, to or in front of those sensitive thoughtful caring people who are lucky enough to be living a "normal life".

This is rightfully met with a gasp, sputtering, blushing and or cringing. Those who are unseemly enough to laugh out loud right along with us take us by surprise and are taken into the fold immediately.

When those from the "outside" only view the hardships of healthcare and sympathize our imagined hell they miss the LIFE that still goes on between all the things to do.

In our experience we had the natural tendency to blurt out what we knew people were thinking so they didn't have to slap themselves in the forehead for saying it later. It allowed people to relax in conversations when we said out loud the absolutely worst thing imaginable so no matter what slip anyone made it was clearly nothing that would upset us in any way.

Sometimes it was just entertainment for Tracy who was such a doer before ALS.

I think he just got bored and had to stir the pot.

Example:

Tracy: in front of the salesman- buy me that

(insert any ridiculously expensive electronic device).

Me: I pretend I can't understand him and smile and nod.

Tracy: He begins to try to order said extravagance directly from the salesman to get even.

Me: What the hell? No. What are you thinking?

Tracy: But it's my dying wish!

Me: You are maxed out on dying wishes this week buddy.

Tracy: Puppy eyes to the man bonding over the shrew wife thing.

Me:You won't have to worry about ALS killing you because if you keep this up I am gonna put your chair on turbo speed and aim you straight out that door onto the highway.

Salesman: Pretends he has an emergency call on a pager that isn't working.

Me: You jackass

Tracy: Shit eating grin

As a matter of fact, my dear sweet (Jackass) dead husband- yep, I said that word dead out loud again, LLLOOVVEEEDDD to watch people squirm as he casually threw out verbal jousts just to see what they would do. No matter how many times I kicked him or his wheelchair he would have that little boy grin with absolutely NO sign of remorse at their clear discomfort and or embarrassment.

Originally I just thought it was Tracy being Tracy but through these past years I have come to find out that it's not just ALSers.

My Dead Spouse Society is a club none of us wants to be in but there is a freedom in this kinship because we tend to say what we REALLY mean more often than most. No matter how horrible it sounds there is absolutely NO judgement because we understand that you can deny the truth or not talk about the truth but that doesn't change the truth. We tend to deal with harsh realities every day so acknowledging them is somehow easier for us than the energy draining appropriate rehearsed responses deemed acceptable to main stream society.

We do our best on good days to not subject you all with horrible but often times hilarious truths of our situations or journeys. Know that we don't purposely set out to send you running from the room with our comments, (well, most of the time).

It's not really our fault.

It seems our Give a Shit Genes gets damaged during the process of our journey

(and some of us were lucky enough to never have that quality to begin with).

Yes, Tracy....I know, I keep ending sentences in a preposition. What are ya gonna do about it now? Huh?? Even now he haunts me about it. There I go again.....

I wish I had the bravery and spontaneous honesty that I reprimanded Tracy for so often so I could share some of the situations we found ourselves in so you could better understand, in order to survive a long term chronic illness, sometimes you just have to laugh.

Perhaps I will block all my family and some of our close friends so I can share with those I never have to look in the eye, some of the realities of living with, instead of just dying of a disease that no one else is bold enough to talk about.

New Year

2016-12-27T22:25:00.003-06:00

Am I right or am I right?

2016

was a terrible year

for so many people for so many reasons.

Even PollyAmy

has to admit

this has been an exceptionally rough one.

Holidays, in general, bring their own set of challenges for any family but most

especially for those who have lost a loved one in this past year.

Not only did I deal with Tracy being gone but I also had at least 6 other

friends or family members that lost someone in this past year as well.

Knowing exactly what they are going thru is more of a reliving than just a sympathizing for me now.

Learning to deal with the emotional roller coaster that bushwhacks us just

when we are so proud of how we are holding up is energy draining to say the least.

But I have to say,

this Christmas was a bit easier to navigate

than the last.

It's not that I miss Tracy any less.

It's more like getting a limb lopped off.

You always wish you had it back.

I just learned to deal with the loss better I think.

I still miss everything

(yes, even the "bad stuff")

about our old life.

That is the new realization for me this year.

Now I am aware of mourning, not just the person,

but also the traditions, life style and past comforts.

I miss my friends, home of over 30 years, freedoms and family back home.

All these things I now have time to miss.

I am not the kind of person

that yearns for NEW things.

I have always loved my old things

(much to Tracy's dismay).

They have history and energy and stories.

Tracy loved the adventure and excitement of getting

whatever the next new gadget on the market was.

New cars, clothes, electronics, etc... brought a gleam to his eyes!

I often joked with him that I was surprised

he hadn't traded me in for a new model.

But I do understand the only constant is change.

I'm not thrilled about it,

but I am doing my best to make decisions that

will allow me to create my own new life,

which is kind of weird since I never had my own

old life.

I have only been a "we" never a "me" before this.

The fact I never wanted this freedom makes moving towards it even more difficult.

The New Year brings resolutions for improvements.

Trying to imagine what I could or should be

doing in the next year seems impossible since I never in a million years,

thought

I would be in the position I am in now.

To me- Literally -

ANYTHING is possible

because I have experienced the impossible.

As I discussed the pros and cons of decisions for independent living,

work, expenses, my future...., my daughter made a comment to me as I was listing

all my concerns.

Suddenly she said- Who are you?!

(Rather exasperated)

She was taken aback as I was focusing on the "real" grown up, tangible concerns

and decisions that will surely go along with a new life.

She emphatically reminded me of what I would

(and do)

say to

others who get wrapped up in their imagination of "what if's".

It really was a wake up moment for me.

No one knows what the future will hold

no matter how

hard you try to prepare for it.

(I still believe a moderate amount of preparation is

necessary in life to keep from taking advantage of

others hard work).

This year's resolution:

The shoulds will be replaced by the

want to's or gonna do's.

Desire and passion are in the forefront.

The problem for me is balancing what I want

(to have Tracy back) with what is reasonable-

which I am absolutely not equipped to handle

as it has NEVER been a description referring to me and I say that

with NO apology.

The compromise puts me back into the

ALS arena I believe.

I can find no way out because I refuse to let those

struggling in the madness of how this disease is

handled, suffer needlessly while drowning in misinformation

and skewed thinking.

I refuse to let all that we learned in our journey

die with Tracy

because I KNOW for a fact it can help others.

If it wasn't for those kind souls who remained in the trenches,

who fearlessly and generously helped us,

I don't know how

long we would have made it.

I can't LIVE in the past.

I can only learn from the past and apply it to NOW.

So as I have pondered ending Tracy's blog with the new year,

because let's face it-

I am not the master wordsmith he was,

I think for now

I will do my best to continue imparting

(what I consider as)

words of wisdom

in hopes that our journey can help heal the world, not only of ALS

but also the medical madness

that goes along with the diagnosis.

I wish for you all Peace, Love and Joy

because

the truth is-

That is all that really matters.

Giving you Thanks

2016-11-26T22:19:00.000-06:00

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.

Ask Questions before accepting answers

2016-10-30T14:00:00.002-05:00

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.

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm378100.htm

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.

http://www.thefarmersdaughterusa.com/2015/09/there-are-no-antibiotics-in-your-meat-now-stop.html

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.

http://www.cnn.com/2015/09/15/health/fast-food-meat-antibiotics-grades/index.html

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.

HealingALS.org

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.

The Dewie Effect

2016-10-28T22:10:00.004-05:00

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.

Playing Tracy

2016-10-27T00:04:00.002-05:00

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.

The Truth

2016-10-26T01:27:00.001-05:00

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.

I'm not him

2016-09-20T22:46:00.000-05:00

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.

Home sick

2016-08-16T20:31:00.001-05:00

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".

Going Home

2016-07-24T12:15:00.000-05:00

In about a week I am going back home to Peoria to celebrate with family and friends.

I wish I was celebrating coming back home or winning the lottery or finding junk furniture.

But we are celebrating Tracy's life.

Doesn't that sound awful that I would rather be celebrating anything but Tracy's life?

It feels really selfish, but it's the truth.

Because the REASON we are celebrating

is because he's no longer here.

Staring at a table of that reminder is good and very uncomfortable.

I think about him many times a day and insert something about him in conversations when I can and adore it when the grand boys are the ones to bring his name up even when it's a comment like-

you haven't watered grandpa and it looks like he is gonna die AGAIN,
referring to the plant we put some of his ashes under in the spring.

Tracy would laugh his fool head off and be so proud

that his grands could find humor in that.

But that isn't the same as the ritual of the LAST goodbye.

(and no I don't for a second believe that it will be the last goodbye ever...case in point- leaving the next day to go to Indiana to say goodbye again, then there is the memorial bricks that have never been placed or even made and his equipment and and and)

I wish I had his blog printed off in book form for this event.

He was so proud of how many people cared about what he wrote and how he wrote it.

I am a bit disappointed in myself that I haven't kept up his wit and wisdom but really-

who could compete with that?

He did have a style all his own:)

I love going through the photos and stories.

I am reminded of all the love

that was bestowed on us through our journey.

I appreciate so much, every single day, all the kindness and generosity friends and strangers have given us.

While the rest of the world gets sucked into the ridiculousness of world politics or cyber gaming or fashion and fame, none of that means a thing to me.

But you all do.

The horrors around the world DO matter to me and the answer to changing that always come back to the same thing.

So simple- but not always easy.

Love.

If these unfortunate people causing so much pain had been show the love and devotion Tracy and I were gloriously gifted then maybe they wouldn't feel the need to TAKE and FORCE and FEAR.

So getting together to show each other how much we LOVE/LOVED Tracy and show you all who and what HE really loved is more than just for us.

It's an example of Tracy continuing to make the entire world a better place.

I'm sure he will be glad to finally be going Home.

Home is where his heart is- with all of you.

Birthday and Anniversary

2016-07-01T08:10:00.002-05:00

Thank you to all who realized that this birthday was gonna be a tough one for me and poured their love and well wishes my way. It really did help. Really.

Our 39th Wedding Anniversary is tomorrow.
Family is making sure I am celebrating.

God Bless you all.

Father's Day

2016-06-20T20:32:00.001-05:00

I tried and tried to get the internet to work yesterday to put up a Father's Day Post saying how great Tracy is/was.

I think Tracy didn't want me to bum people out whining so he put everything on the fritz- so like him.

I can't say Happy Father's Day 'cause it was surprisingly hard to get thru. People are always surprised when I am surprised. But I truly am.

These couple weeks leading up to it sent me back to the first weeks Tracy left the planet. Kind of Sucko, even tho our kids did everything they could to make sure I was ok and had a happy day.

It was hard on all of them as well - which selfishly made me feel a bit better cause it's not just me refusing to move on, I say to myself as I lecture me about pulling myself together for goodness sakes.

I never used to be such a whiner!!! Ugh.

Where the hell is PollyAmy??

Luckily 2 of the 3 grand boys had birthdays this weekend and then Tim, my son in law got a blip of recognition for his contribution in the fathering field. These were great distractions but everything is bittersweet.

Hard to NOT go shopping in the men's departments anymore. Hard to not look over to see him laughing at the grand kids antics.

I took the kids to Chuck E. Cheese- NOT a Tracy place, but he loved to see the kids have fun and HE loved video games so I am sure I saved about $100 not having him there. Not nearly enough danger for him and the kids in his mind I'm sure. He would have wanted me to take them dirt bike racing or bungee jumping.

We went to Finding Dory- which he would have liked (because between watching Kungfu movies and watching people's heads explode he loved the kids movies and Planet Earth documentaries) but he would have LOVED taking the kids to the movies and having Isaac sit up in our laps during the scary parts.

Tracy loved, LOVED, LOVED going to the movies.

If it was a rainy day -his best buddy and co-He-Man at the job site, Jim, got rained out and they went to the movies. If it was too nice of a day- They got "NICED OUT" and went to the movies. If he was the only one at the job and couldn't get stuff done....If they got a job done early- They celebrated and went to the movies.

Now I thought he was out busting his buns so I could eat and buy paint supplies to find out during casual conversations weeks later, usually with other friends, he knew ALL about some movie.

I'd say- HEY! I thought you were going to take ME to that and he'd give me "that look" and make up some ridiculous story knowing I wasn't gonna fall for it. Or he'd say-I took YOU. Don't you remember? (knowing I never seem to remember the first 2/3 of most movies I see anyway). Then he'd offer to take me so he could see it AGAIN if it was good (and even when they weren't).

Then we went to a Chinese Buffet here in Dallas (cause I conned Isaac into conning Asa into saying it to his parents as his Go To Birthday Dinner wish- yep, I'm a bad Granny B). Tracy loved what we referred to as Cat Head Buffet in Peoria (that is now closed due to Health Code violations (we probably weren't kidding with that name) and he would eat enough bad sushi with buckets o' Wasabi for at least 10 -300 lb men . I opted to just enjoy the other men's plates mounded to the point of spilling over with creepy creatures of the deep and got deep fried everything and sticky rice.

I thought having Halloween 3 days after he died was hard, then Thanksgiving, one of his favorite holidays because it's not religious and it was about bringing fun and family and food together (sooo Tracy) then Christmas, with all the presents and the grand kids (he LOVED to buy presents for people) then New Years- reflection of the past year....Then his birthday Jan. 30th.

All this in just a few weeks from his passing.

I thought- Man, I can do anything now that I have THAT over.

But no.

It's a FULL year of firsts. First Father's Day without him. First kids birthdays without him. First...ugh.

The other hiccup in posting is that I don't have any pictures of the ACTUAL Tracy. I only have computer pictures of the ALS Tracy.

That was so NOT him- except in the way he handled it all.

He was so embarrassed to have pictures that showed his hands. He was not especially vain. He had such pride in his strength and was so competitive. He could drive a 16d nail in 3 hits consistently. A tap, a hit and a finish without waffling the wood. Always amazed me.

But he was a pretty good sport about me clicking away.

I hope to find a way to get pictures on here of Tracy from our youth.

Another miracle to create.

Father's Day was especially challenging because there is/was no man on this Earth that was prouder of his kids or grand kids as Tracy. He would do ANYTHING for them- even when I was bitching in the background that he was spoiling them rotten and it wasn't a good thing and....Didn't make him no never mind. The kids always thought we exaggerated to people to make them feel good. Nope. Tracy was excruciatingly exuberant about sharing every single little burp and giggle to EVERYONE about EVERYTHING our kids did, thought about doing, Could do but didn't.....Tracy was an ALL IN kind of guy. No limits on his passions. He truly believed his kids were better- (yep, I'm playing Tracy and telling the absolute truth here no matter who UN PC it is) in every single way than anyone else on Earth and no matter how many times I tried to say- every parent feels that way- he'd say- yes, but I'm right:)

So every time I look at our kids and grands I can't help but think how proud Tracy would be and how much he would have loved to see this and that and what he'd want to do to help them reach their dreams. He still is. Just from the other side.

Miss ya big man.

Happy Father's Day

I guess it's NOT ALL his fault

2016-06-01T22:16:00.000-05:00

Those of you who have followed our story for a while know I love to blame everything on Tracy.

Even tho he's not here now that doesn't stop me. Some things never change.

I used to nag Tracy for spending so much on tools.

Yes. He was a fabulous builder but Tracy LOVED NEW tools.

He loved the BEST tools.

He only wanted ME to have the BEST tools.

I would Never spend the money on top quality and had the make due mentality.

Made Tracy crazy!!!

Every time I hear a slap stapler or electric saw I have to look. The smell of warm sawdust will be like perfume to me forever. Our love of wood was one of our common passions.

Tracy would see all the craft creations I cut out and laugh that he could build a million dollar mansion with all that wood. I often would dive into the flames at the job site burn piles rescuing future imagined treasures as Tracy called to Jim -

QUICK!!! Here she comes!

Throw the rest on before she gets here!!!

I was at Home Depot today to get things for work and was drawn like a magnet to the tool section (via the ooopppsss sale paint shelf). I pretended to look at sand paper for upcoming classes for Studio Bella and even a drill bit or two but really...

it was the power tools I was interested in.

As usual, I just HAD to check out the drill press and the band saw, both tools I miss so very much as they "didn't make the cut" (yes, that was a tool pun) when we moved from Peoria.

Do you know Ryobi makes a 9" table top model for just $129? It's not the grand JET mega model Tracy gave me as a gift that was adopted out before we left but what a deal right?

I bought a used Demel scroll saw here for $40 at a garage sale in the neighborhood a few years ago as a birthday present to myself that I have used and abused as a replacement for my Frankensaw from back home. I wish I would have taken a picture of that monster band saw that was an old cast iron Craftsman. It was missing parts including the rubber on one of the wheels and had a wall switch box for the on/off switch. I am pretty sure I got it as a hand me down from my sister Suza when she upgraded about a billion years back.

Then I saw the portable table saw which I most likely would cut my fingers off with ( I know I know- the preposition at the end- I hear ya Tracy) but I lust after anyway. Tracy would tell me that it's CRAP and to do a good job you have to have a GOOD TOOL. He could justify ANY tool like I do a book or can of paint. I would huff at the expense then secretly hope he would buy it, leave it out, think it got stolen or forget he had it when he got a new one and I would acquire it.

As I looked to upgrade what I did bring sadness set in.

I couldn't even find batteries for my 2 old Ryobi drills that I love because they have the magnet for extra bits when you change back and forth from drill to screwdriver tips. Tracy was smart enough to get me 2 drills so I didn't have to stop and change bits. I didn't even SEE Makita batteries for anything much less my other drill.

The Hitachi Reciprocating Saw Tracy got me before he left has the Lithium Ion battery so that should be good for a while. People thought, what a dumb gift to give me when I needed clothes or could have gone to dinner but I assure you I have enjoyed it more than make up and a bucket of popcorn.

I can't replace the battery in my old Black and Decker electric screw driver which I'm bummed about. I still have it plugged in even tho it doesn't hold a charge any more. I keep hoping it will come back from the dead.

(Reoccurring theme in my life at this time).

The DeWalt construction radio uses the same battery as the small circular saw Tracy gave me but again...huh...it doesn't hold a charge well enough to cut and the blade is the same one I had 5 years ago.

I sure wish I could find someone to work on the Porter Cable Jigsaw that was Tracy's. I have a junker jigsaw but man the Porter cuts like butter when it works. I think it's just a faulty cord but Tracy thought it was more than that. I couldn't justify the expense (cause I'm a cheapskate) of finding out but I keep hoping I find someone in the neighborhood who likes to tinker.

I think of all the silly things we brought with us from Peoria like they were so important and how we sold off all the tools we both loved because I thought we would never have time or reason to use them again and I could just kick myself.

Now that I am working with Studio Bella and sending projects to DecoArt and working on my ETSY shop my old addictions are kicking back in.

I always thought it was MOSTLY Tracy who had the thing for tools but I can see now....

I might have misjudged that.

Minding my own business

2016-05-24T00:49:00.001-05:00

I keep trying my best to not get OVERLY involved in this healing stuff.

I resist the best I can to stay off my tufted, striped, tasseled, glittered soap box about our journey through the ALS nightmare.

But then just when I think I have a chance of making it back to some sort of a balanced normal life something like THIS shows up and I am thrown back into the whirlwind of memories and emotions.

I hope you watch this video.

https://www.youtube.com/watch?v=CaD-oF9deNY

This is video is Good news.

GREAT news actually.

Dr. Bedlack is a doctor who has been researching outside the box to find ways to heal ALS.

He is a well respected doctor inside and outside the standard medical community.

He speaks of new developments in gene recognition associated to ALS.

He mentions being aware of at least 24 documented cases of ALS reversals,

at least several of which are people I have become acquainted with and who helped us heal many problems in many ways.

He mentions Lunasin by Reliv which we have in our home at this very moment that Tracy did take.

He talks about the fact that those with ALS don't really die of ALS.

They die of complications due to immobility.

He talks about being on a vent as an option that most ALSers don't take because of their perception of lack of quality of life but they COULD increase their life expectancy if they chose that path.

He gives credit to the Ice Bucket Challenge for providing financial resources that have allowed some ground breaking new discoveries that may allow a CURE for ALS.

Here is a REAL medical doctor validating all the things that I discovered on my own so why am I upset?

I am upset because we lost our battle with ALS.

But did we have to?

We lost it because doctors told Tracy and I repeatedly from the moment of diagnosis-

Do NOT TRY to heal.

They shamed me through our whole journey and told me "I was cruel to for dragging him thru this".

They told me that I was "in Denial" and "Obsessing" more than a few times when I tried to ask questions about health and negative side effects of drugs they forced on him.

The flatly refused to even discuss the health ideas those who HAVE reversed their ALS symptoms used.

When we DID heal symptoms they told us were impossible to heal, they completely ignored our success.

They refused to "do anything extreme" to relieve Tracy's congestion due to pneumonia because they told us "there was no hope of him having any quality of life and he wasn't going to get any better".

And again- I was being cruel to continue to ignore the truth of the situation.

The truth is - Tracy had no interest in living as a quadriplegic. He was done fighting every single minute of every day believing he had NO chance at a real life.

Would it have been a different story had they, at diagnosis, kept their lecturing and close minded opinions to themselves?

What would have happened if they had acted surprised and pleased when we stopped spasms, returned his blood pressure and heart rate to normal, returned to Pre Diabetic health by diet change and stopping meds?

What would have happened if they had actually looked up any of the people I told them I was talking to that had healed their ALS?

And on and on and on.....

But Tracy is gone so what difference does it make now.

It matters because I wasn't wrong.

I wasn't crazy.

I wasn't just ignoring the hard reality of the diagnosis.

I am not just an overwrought, emotional widow, bitter because I didn't get the fairy tale ending I wanted.

We were lied to and mislead over and over again.

Tracy suffered absolutely unnecessarily on many occasions.

He was given meds that were harmful after we repeatedly told them they were causing problems.

We were given very harmful medical advice that was just ridiculously wrong.

Over and over again we had to take our health out of the hands of the doctors due to the harm they caused and covertly use natural methods to heal the damage they caused.

But...he is gone so what is the point?

The point is every single day new families are devastated by the diagnosis of ALS.

They are told in horrific torturous ways a doctor's reality of the situation that is created by their choices on many levels. They are asked repeatedly to sign a DNR from the minute they are diagnosed.

They are told "there is NO evidence" that anything can help.

They ARE NOT told that the drugs that are shoveled at them CAUSE many many problems that we are all told are symptoms of ALS.

How do I ignore these facts when we experienced them ourselves?

Knowing how much it helped us to have the HealingALS.org people CARE about our struggles allowed us to LIVE each day instead of DYING each day as we were instructed to do.

Why can a doctor say- here is a group of people who have REVERSED their symptoms by means that have NOTHING TO DO with the money from the Ice Bucket Challenge and NO ONE will donate a nickle to the people WHO HAVE ALREADY ACCOMPLISHED HEALING ALS?

Was I cruel to drag out Tracy's life so he could know his grand children and for them to know him?

Was I selfish for wanting him with me even if he was in a rolling chair?

Maybe.

But what if..... What if we had known at diagnosis all I know now?

How can I NOT want to share that with those entering this nightmare?

I might need to get a bigger soap box.

Becky and Kelly Cutler

2016-05-02T23:09:00.000-05:00

Tracy just made a great new friend.

Becky Cutler.

I am so sad to say Becky left the planet this morning.

https://www.youtube.com/watch?v=ak57oWbd82Y

I've only known the Cutlers a short time

but they make quite an impression.

I met Kelly, Becky's husband, #1 fan and very devoted caregiver at the All Good Cafe where he was gigging.

Their names kept being brought up to me by other musicians I would talk to at the open jam Tracy liked to go to.

Turns out that Becky had ALS and I thought maybe I could help them with something, anything, I had learned from my journey with Tracy. Then I found out once I was there that the mother of the waitress there died of ALS a few years back.

How strange is that?

Well as it turns out they were wonderful folks and accepted me into their inner circle and made me feel like family right away. I feel so very lucky to have them have befriended me.

To lose yet another wonderful person in my life to ALS just lights that fire under me to change things and help and educate people EVEN MORE.

I have had many many many people all agree with each other and say to me, repeatedly, passionately, lovingly- I don't think it's a good idea for you to put yourself thru "this" so soon after Tracy's ...er..uh..mmm...leaving.

I thought- Wow- EVERYONE is saying the same thing. They MUST be right. You can't get 3 people to agree on ANYTHING, so to have all sorts of people from psychics, to family, to well informed authors and professionals agreeing it's a BAD idea to get involved with the Trauma of others ALS journey right now while I am still in shock and reeling with the many unwanted life changes forced upon me, I should really LISTEN TO THEM.

I want you all to know- I DID listen,

I am STILL LISTENING.

I have really tried to wait, to rest, to heal, to observe, to keep my distance, to remain reserved, to focus on ME, to give myself time.

The problem for me is that I am not the rest of the world.

I used to think I was middle of the road and average in my views.

This journey thru ALS has proven that clearly,

I was mistaken.

As I sit in sadness at the loss of yet another wonderful, creative, delightful, talented person at the hands of ALS I am so disappointed that I wasn't able to do more to stop this outcome. But at the same time I am so glad I had a chance to meet Becky and Kelly. I feel so lucky to have been invited into their lives at this point in their journey and I wish I would have met them years ago.

There are some things that only those in the "trenches" can understand or even laugh at. They both made me feel comfortable just being me from the first minute.

They are entertaining and honest and have amazingly generous and extremely diverse friends they shared with me from day one.

I am finding the whole widow thing very taxing because as I venture out to make new friends or go to festivals or events on my own, of course the discussion of - what brought you to Dallas? comes up.

Talk about a conversation stopper.

I tried a couple times to avoid the whole subject without flat out lying but then they ask why the hell I can't find my way more than 2 blocks from home if I've lived here 4 years. What do I do for a living? Why am I living with my kids?

I tried explaining I am directionally challenged but polite people making polite conversation ask questions and I am just not smart enough to come up with half truths quick enough to make any sense.

Being with the Cutlers there is none of that.

We just got to be US. No tippy toeing around subjects. The extreme personal realities of care giving or being cared for allows a bluntness out of necessity.

(But I have to admit that our sense of humor tends to lay in the same gutter so quite possibly that care giver thing might just be an excuse.)

It must be how really brilliant people feel about the rest of the world.

"They just couldn't understand".

There is a special bonding being with people who REALLY know without having to ask.

(Not that I mind anyone asking anything now. If I can help anyone at all with anything to make their lives easier I am all about it).

So now that THIS day has come to have to deal with and I ponder who was right, Because they all warned me- there isn't a second's hesitation. I have absolutely NO regrets about spending time with Becky and Kelly and I am damn glad I did.

I am not sad for Becky any more.

I was before, for all that she lost and suffered through. Now my heart goes out to Kelly, understanding his loss.

I'm sad for me and the good times I won't get to share with Becky.

I was often accused of being in denial by doctors.

I am often worried about as being in denial to this day about things still by many who care about me.

Even beautiful sweet Becky was worried about ME and how I would deal with her leaving just days ago because I continued to bring or do anything I might think helpful as if she would live to be 100.

(This kindness and attitude is typical of those with ALS and is why doctors call it "The Nice Guys Disease").

NOT FACING the reality of ALS - not giving ALS faces- real live people- doesn't make it go away for me. It's not out of sight out of mind for me.

That is denial to me.

Knowing each day that people are being diagnosed and are told there is ONLY one path and it goes like this - KNOWING that doesn't HAVE to be the ONLY truth, is as agonizing to me as losing someone face to face.

It's the SAME to me because we lived that reality.

Every person suffering from the ALS life feels just like Tracy and I to me.

Taking time to "pretend" it's not happening does NOT do anything to help me heal.

It makes it WORSE for me.

I know. I did try it.

I do understand how others can NOT understand that.

I do understand how others don't feel that way.

I am sorry that my choices worry and stress my loving family who are still trying to heal themselves.

But how can you put yourself thru this again?- people say to me or think loud enough for me to feel or hear.

Because at least I TRIED.

I let Becky know that she wasn't an ALS patient to me. She was a wonderful beautiful person who happened to get the worst disease on the planet. She got to share stories with me about her music and family and life and friends because I spoke ALS, (it's got it's own accent that you have to get used to) when others couldn't understand her.

Maybe I gave her a pillow to make her arm feel more comfortable. Maybe I only bugged the shinola out of Kelly and Becky but at least they were aware that I cared enough to make an effort.

I KNOW how much I STILL appreciate every single act of generosity and kindness that were shown to Tracy and I. When you can't leave the house and you spend weeks not talking to anyone but doctors who use you as lab rats, every card, email, dirty joke, phone message, simple gift, kind word and dollar means so much and always will.

ALWAYS.

To think that I might be able to relieve even one day of that gut wrenching agony of panic and despair at the hopelessness shoveled upon those diagnosed with ALS is worth whatever I have to deal with on the backside.

Side note:

I come home from work today after learning about Becky's passing and there are SEVERAL FB messages to me from ALS pals.

One if from Reliv answering that they are willing to help me help an ALS family.

Then there was a message from THAT family saying thanks for helping them and her husband is showing signs of improvement already and has new movement in his arm.

Then I have another message from another ALS family that made no sense.

I responded to find out she was answering a message I sent in Feb. that

JUST SHOWED UP TODAY.

She is now newly encouraged to make renewed efforts in researching healing for her loved one and even joked Tracy must have had something to do with it.

So just when I was feeling really sad that I could not stop what I was told was impossible to stop and I was beginning to doubt myself

I got 3 messages at the SAME TIME

saying how much I have helped them

just by caring enough to try.

Don't ever be afraid to love someone because you are afraid you might get hurt.

Flashback

2016-04-20T19:44:00.000-05:00

So remember the story I wrote last week about the gal wearing a pin that matched my necklace and the wrap she was wearing made from the EXACT SAME fabric as Tracy's Hand Pillow he used every day so I thought it was a sign he was still around and trying to give me messages?

Well- the story continues with....

a psychic pal of mine told me Tracy was going to prank the family several times in the near future.

(back story is over the years we had some MAJOR Prank wars in our household).

Yesterday my daughter comes racing in yelling MOM!! Hurry, hurry, come quick!! (so not like her at all). I race thru the house after her to their bathroom where she says- quick- peek in!!!!

I look at Alex, our 8 year old grandson, who is laying on the floor outside the tub with the shower curtain under and over him, with his legs hanging out!!! Sarah and I burst into gales of laughter- upsetting our grandson greatly who had fallen out of the tub reaching for something and was still suffering on the floor, cold and wet and hurt.

THIS EXACT SCENE was a favorite story of mine about Tracy.

Now, you have to understand first that Tracy put up with a LOT of crap from me. A LOT. He did deserve most of it but he usually had a pretty good sense of humor about things. He was a super duper tough guy and never whined about cuts or bruises or crashes or gashes or lighting himself on fire. So it took a LOT to make him mad.
My reaction to THIS really did honk him off!

So to set the scene- I have no idea what year- I would guess it's the early 90's because he had not redone our bathroom yet. It was so small ( I hear Johnny Carson's How Small was it) that we actually couldn't open the cabinet door because it hit the toilet. There was only enough room between the toilet and the tub for a plunger, not even a small garbage can. We had a shower curtain on a rod back then and a second one that was decorative (like the Walmart Sunflower curtain tied with dime store ribbon was going to distract from the horrible electric blue wall paint Tracy picked out).

This matters for visual effect.

So I am doing whatever I did back then and I hear a weird noise from the bathroom. Then again I hear a muffled strange sound. I knock on the door and say- honey? No answer just weird noises.

I open the door to see Tracy stuffed on the floor, stuck like a turtle on his back between the tub and cabinet, with both shower curtains draped under him and over him and his legs over the edge of the tub kicking away while the shower head sprays water like a fountain out of the shower all over him.

After a second or two of taking in the sites I begin to unearth him from the wet rubble while laughing hysterically. Surprisingly Tracy saw absolutely NO humor in the situation but couldn't yell at me for my lack of consideration and understanding of the danger of the situation until much later because he had knocked the wind out of himself which is why he didn't holler for help.

He lost his balance and fell out of the tub hitting his back on the toilet. As he launched himself out of the tub he did a windmill with his arms knocking the shower head to the perfect angle to water him as he lay helpless on his back.

The site of him in his birthday suit, with the exception of his head which was covered by the shower curtains, being watered while he kicked like a wind up toy has been the source of many many smiles over the years.

When I peeked in and saw Alex it was an instant flashback.

Tracy may not be HERE but he isn't gone either.

He always could make me laugh.

Nice one babe.