Minding my own business

 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

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

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.

My Frustration

Meet Steve Shackel.

http://healthadvocatesworldwide.com/steven-shackel-details-on-how-he-healed-als/

 

I've been chatting with him recently about how to fund the movie and book which includes his story of healing his ALS.

Steve is ANOTHER one of those people that Doctors assured me didn't exist. They knew nothing about him and didn't care to hear about him or his ALS journey.  IF he did heal himself of ALS They said (which they doubt even tho their own medical doctors diagnosed him more than once) it had nothing to do with the TRUTH as they tell it. The doctors don't want to spread FALSE HOPES! God forbid! There is NO PROOF they love to say to me.

How horrible to let someone be hopeful or happy AFTER diagnosis of ALS.  Unthinkable!

How CRUEL I was, I was told repeatedly through our journey, to remain in denial of our doom.

It was shameful and obsessive of me they said to "ignore the facts" of the situation.

Had these same doctors spent their time ENCOURAGING US instead of reassuring us we were DEAD from the day of diagnosis I wonder what would have happened.

I bring this up because so much of what Steve says matches our journey.  So very similar to Kim Cherry who also healed his ALS and has now been officially documented as an ALS reversal by the medical world. 

I am so frustrated that the world seems completely HAPPY to give MILLIONS of dollars for RESEARCH for a DRUG which by definition must have a negative side effect because it's not natural to the body according to what the Pain Management doctor explained to me, while IGNORING live breathing, functioning people who have ALREADY ACCOMPLISHED healing ALS.  

To spend YEARS arguing  and being shamed by doctors as they ignored the damage they inflicted on us repeatedly and then be surrounded by those who successfully battled the SAME situation knowing what is going to happen to most of those being diagnosed every single day because NO ONE wants to bother to stand up and make the changes is beyond frustrating and so sad for me.

I am not spouting CURES and MIRACLES.  I am saying Stress if bad for a nerve disorder.  Nutrition is good for everyone. Those following HEALTH minded living have successfully REVERSED ALS SYMPTOMS.  

How do we get the news to take notice?  How do we get some company that needs a financial write off anyway to pick US to invest in?  Who needs to suppress this information?  Who will lose by the truth being told?

HELP US. 

Signs

How many of you out there have lost someone you loved?  How many have wished that you could just have some sort of sign-anything- to show you your loved one is okay and that you aren't REALLY alone?

What do you do when those signs show up?

Do you believe them or make excuses why it's not real?

I have had phone calls from people who know me well and don't know me at all telling me they have heard from Tracy.  Once in a while I have seen something or thought something that made me think- wow, that is SO Tracy and considered how much is wishful thinking on my part.

I have had one dream that I felt him in.  I have had several others tell me they have dreamed of Tracy. 

It still has seemed very distant like a fairy tale when I hear these comforting accounts.

Today- The doubting Thomasina is gone.  

As I am exploring which direction to take my life I wished that I had a REAL sign that THIS is a good idea or that is worth doing or follow my heart, not my or other peoples heads or or or.

It's so hard because every fun thing that pulls at my heartstrings is almost instantaneously followed (or grouped) with the sadness that I HAVE to pick a direction because I don't have what I REALLY WANT- and that is for time to reverse itself and I figure out how to keep Tracy with me in some happy healthy form.  

Life now is the choice of the best least worst direction to go which would have been a great or better than great direction if Tracy was still here.  

See why it's confusing?

So while I rehash all the happy sappy lectures I gave Tracy trying to get him to want to stay around in whatever condition he happened to be in and apply them to myself, I wander around the art world (because the healing world is semi off limits to me for the moment according to those who love me and are trying to save me from myself) searching for a way to reconnect with some part of my soul.

At the local farmers/art market I was shopping/researching today I said hello again to an artist I had spoken to last week.  She looked very professional, her work was high quality and we hit it off right away discussing all we had in common from grandchildren to owning retail stores, arts, production, etc.  

The truth is I have a cold/flu and look like the Walking Dead so my intention was to just look and get some fresh air, see how much foot traffic the show had, see if anyone actually had any bags in their hands and so on.  I warned the gal immediately about the plague I may be carrying and she was very polite and continued conversation with me.  She sews wraps, sophisticated 8 pocket tote bags and baby items.  Excellent work. 

On the wrap she was wearing I couldn't help but notice the fun vintage silver art paint pallet pin she had on her wrap that is JUST like a necklace piece that was given to me by a family member as a gift a couple years ago.  I love this necklace and would wear it more if I had earrings to go with it.  I've looked since I got the necklace for just the right ones which is funny since I could just wear silver but some how that takes the fun out of the piece for me. I want just the right ones.  So when I saw the pin that looked JUST like my necklace I commented on it and she said yes it was old.  I told her my story and said that her pin gives me hope that maybe I could find earrings like that and she said- THIS WAS AN EARRING and showed me how she had slid her wrap through it!! 

 

Okay- catch your breath....it gets better.  

I know!!  How can it? right?  But when I ask for proof I mean TRACY proof so-

As my mind is reeling from this major coincidence the wind flips the corner of her wrap up and I see that it's polka dot on the backside and striped on the front and IT'S THE

SAME MATERIAL

  that Rachel our daughter used to sew the pillow cover for Tracy's hand pillow  he used every day that I have recently shared with the Cutlers who have befriended me who happen to be on their own ALS journey.

So- Whatever I think I might have been thinking it's clear that this artist or art market must have something to do with my journey whether she wants to or they want to or not.  That it was worth dragging my sorry butt outta bed to get fresh air and art this morning. 

Many tell me the cyber world is the way to go for my art sales and the art markets don't seem to be making $1.50 these days and I thought I was too old and lazy to do it anyway I guess it just doesn't matter.  

If I am asking how to get somewhere and people tell me follow the signs and I don't,  I can't really blame them for me not making it to where I want to go now can I?

How does this help me?

Well, one of my big struggles since Tracy left, is the idea that now I have to grow up, get a REAL job, focus on an income instead of playing with my head in the clouds. 

Tracy always protected me from having to grow up.  He NEVER wanted me to work in the real world ever not even in high school.  He got me "to quit" the nursing home, Burger King, Pizza Hut and the Post Office.  He only wanted me to do what I WANTED to do.  Instead of asking what the hell I was doing selling off pop bottles and some of his tools to pay for art supplies to have a home show to start my business he encouraged it.  When I started the Something Unique Home Party plan with my friend Claire which meant HE had to watch the 3 small kids several nights a week and the house NEVER got cleaned he never complained.   He pushed and pushed me to open the 2,500 sq. ft. art studio in Bartonville (right behind the old haunted state hospital for the "incurably insane".  Coincidence??? )

 

  When we were diagnosed and I stopped painting I considered taking a waitress job for quick cash tips and he was crushed and cried and cried until I promised him I would never ever do such a thing.  

Having such a CLEAR sign that Tracy is hanging around (even at art shows that he was bored out of his gourd being dragged to when he was alive) while I am asking should I do these little shows? Should I divide my time?  Should I paint what I love or what I think will sell? Do I ONLY do Studio Bella which has been an absolute miracle?  Do I do what I used to do and drag all these wonderful new people INTO Studio Bella because I WANT to work with them too?   

Well this signs point to Hell Yes.

So watch out world!! I don't know where I am going or what I am doing (just like the rest of my life:) but I will follow what is fun or I think is good for others full tilt with no one to stop me now that I have stopped stopping me.  

I have also opened that door to help others who are struggling due to health issues even tho I have been warned again and again against doing just that for my own health, happiness and safety.  

It means a lot of time for no money, being emotional about their struggles while I am still dealing with mine and maybe even going back to hypnosis that helped us so much on our journey.  

I have been searching for something to paint OTHER than furniture because I didn't know about this area buying it or my style here and I am older and lazier and I don't have any room to store things and no where to sell them if I actually Did get them painted.  But- I guess that will have to take care of itself because I think I got the answer I wanted.  

Isn't that what everyone wants?

Thanks Tracy.  Miss ya.

Beyond my comprehension

This post is prompted by a series of comments within the ALS community and out on who is promoting FALSE HOPES, who we call charlatans, what is snake oil etc.

My opinions come from OUR 

(Tracy and my, mine, me???? huh....sorry dear)  experiences but also the experiences of those around me who "warned us", guided us, educated us, took advantage of us, protected us, helped us, believed in us, depressed us, lied to us, inspired us, talked with us, gave to us.....

There is post after post on Facebook, You tube, the internet in general about what is true and who is telling the truth when it comes to ALS and the journey that goes with it.

This is so important because FALSE opinions KILL.  When people in crisis are discouraged away from healing concepts the results are obviously deadly to those with ALS.

Almost without fail when there is a hopeful, encouraging post about how to help those with ALS improve their health there is someone or a series of someones screaming BULLSHIT. Almost violent in their reply.  Sometimes that's it, but sometimes these people will go on to say "if this was REAL certainly the Doctors and medical world would know about it". 

 (Show me PROOF of that statement.  

That is NOT a FACT is it?  It's an opinion based on what?)

When people cry BS- their logic is often times- doctors say that's not true, it can't be, it's impossible.  Doctors say- there is NO PROOF.  If there was proof they would have a test to show that it is true.

(case in point: There is NO TEST to PROVE you have ALS.  How can there be a test that you have healed it?)

How can they test for something when they themselves admit they haven't a clue what they are looking for or at?  Because THEY don't have a test doesn't mean anyone healing was never sick.  That makes no sense does it?

I was one of those who believed this, in the beginning, that Doctors were the EXPERT

S because they told us they were.  

Everyone else told us they were.

I was brought up with the understanding that there is a God, the sun rises in the east and sets in the west and doctors were brilliant over worked kindhearted people who have committed their lives to healing the sick. Next to priests they were the go to guys.  

(I know, look how that turned out). 

I said those exact same words at first.  Tracy said those exact same words.  EVERYBODY says those exact same words.  By why? WHY do we believe the doctors.   Because they say so.  But THEY also SAY to us- We have NO idea why you got this. We have NO IDEA what to do to help you but don't look to see if anyone else can help.  

This mindset is absolutely beyond my comprehension.

Why wouldn't we or shouldn't we look for healing when they tell us they have no idea what they are doing and they have PROVED they are right about that fact for the last 80+ years? 

Perhaps the answer isn't medicine!!! Which is all they provide or test for!

 

What other industry besides medicine could get away with that attitude of we can't help so don't look for anyone else?

If a car repair shop said they had no idea how to fix your car- would you respect their opinion and just not try to fix your car? Junk it?  Or would you say- I'll ask around for someone who has fixed the same kind of problem my car is having?  

They repeatedly tell us they know NOTHING about what to do or how to help but they are SURE that the people who are walking and talking and working 10-20 years after diagnosis have no idea what they are talking about because they haven't met the medical world's requirements of proof.  The people who have healed are not investigated or tested even tho they have offered themselves as lab rats.  Why?  Why are they not investigated?

I am not saying believe me.  I am saying if you are so SURE you are right, and that I am a silly, misguided nimrod- prove me wrong.

Pick up the phone and call these people who say they have healed like I did.  Get on skype.  Ask for their records.  Meet with them like I did.  Give them a polygraph.  

Or just keep believing what you want and spitting out opinions on what is REAL without doing a lick of research.

The reason I am sooooooo pushy about this point is because those FALSE opinions KILL.  

Telling people that they are gullible fools to even consider looking for healing is CRUEL.  

I have had these words spit at me by many a doctor when I made it clear that I was working to heal my husband.

 Either doctors DON'T know about these people that I found (when I had no time or sleep and no education and can barely turn the computer on by myself)  or they won't ADMIT to knowing about it because I know for an absolute FACT, what helped us and their information did.  I may not know why.  I may not know if it is gonna help another person.  But I KNOW it helped, because we experienced the improvements.

I found that help by searching for people who have healed from ALS symptoms.  I CALLED THEM.  They did not solicit me as doctors want you to believe.  They offered their information freely, passionately.  They sent us things at their OWN EXPENSE in order to at least TRY to help us. That in itself was healing.

When I tried to tell the doctors, nurses, staff, clinicians how we improved symptoms NO ONE wanted to hear it.  Not only did they NOT ask questions, they got up and physically walked away.  When I tried to share anything that helped us with other ALSers ASKING US why we were doing so well we were consistently interrupted.  They politely made sure I did not pass any of my info to others.

I know, I know - I am stepping into a big old pile of dog poo by posting this.  I'm not doctor bashing for it's own sake. I am trying to get you to wake up and ASK QUESTIONS before you blurt out an uneducated opinion!!!  I now formally put MYSELF (before anyone else could) into the crazy conspiracy pile.  That's not my goal.  It's a sacrifice I am willing to make to help others suffering needlessly.

Now, honestly- I can understand why a clinic or doctors office would not want me spreading hope where they believe there is NONE to be had-( except that depression added to a nerve disorder can only make things worse but lets pretend I didn't say that for now).  

But, if someone DID improve things you were saying were impossible to heal- wouldn't you be curious?  I mean I'm not saying we had a magic cure.  I am saying we IMPROVED ISSUES they said were impossible to improve.  They said things were symptoms of ALS that we healed after they told us they had NOTHING to help us.  They told us we would have to learn to live with it.  It was part of the journey.

I am saying that the next time you read a post that is hopeful followed by someone's "opinion" that it's crap- ASK THEM- why do you believe it's crap?

If they have NO PROOF tell them keep their opinions to themselves.

It's all his fault

There are so so many important issues that I should be writing about.

Easter just passed.  

I planted parts of Tracy's ashes in several places.

ALS research and politics.  Insurance issues.  Other ALSers issues.

Work, finance and family.  Things that matter.

But since there is no one here now to MAKE me be responsible, I choose nonsense.

I told him not to go.

 I warned him what would happen.  

I am not making it happen.

I am not purposely creating a self fulfilling prophecy.  

Knowing what will happen is not MAKING it happen.

 There is no one here to make me go to bed so I'm not.

I ate a late dinner of expired cottage cheese, brown peaches and a half dozen chocolate chip oatmeal coconut oil cookies.  If I wasn't so lazy I would add fried puffed rice.

I am migrating back to my baggy clothes covered with paint and leave the house forgetting to even check if I have make up on more and more days.

I warned him.  It's all his fault.