Strange things Brewing

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.