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chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,265
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Well after a big family wedding that was a lot of fun I am now at home trying to rest up.
My body is like a big shovel of really good earth that was placed in a creek of moving water and just slowly little by little it crumbles away almost unnoticeable at first then more and more so as the water erodes the pile of earth down to nothing, this nightmare never stops!
Everything goes, it is so hard to keep accepting what the new me is when there is very little left. Now sister morphine is becoming my friend as my breathing is labored and the trilogy works only so well. I know this too will pass and I appreciate the place to rant some, I am sure tomorrow will bring new light.
The combo of my body failing and so many pals moving on lately is hitting hard and it's not like we're not fighting and living life to the best we can, but it does seem to be like pissing in the wind. Don't read this if your not feeling good! Dam should have said that first! Thanks family love a all chally
 
Big hugs Chally Wxx
 
Chally, even you, the eternal smile maker, get to rant here. This monster...the only way I face it is to not think about it, but with each loss that gets harder and harder. You've been so very active--perhaps some rest would slow the erosion a bit. What a sucky choice to have to make--do less to slow down or do more and speed it up. Matt is still recovering from the Colorado trip. I'm praying for a stop to your erosion, my freind...
 
My heart goes out to you.
 
Anyone dealing with this crappy disease deserves to rant whenever they feel like it.

The constant losses are so very heartbreaking. It was overwhelming just watching it happen to my husband.

Sending hugs your way.

Joan
 
Chally, I want to let you know that I truly admire how you are living your life with ALS. Its a life that even those without this monster... seldom live. You are ceasing each day and LIVING it. I am not sure if staying so busy is speeding up the erosion...but I think you are dealing with the monster on your own terms.

That being said, I would truly give everything I have to stop or slow your progression...along with all the PALS. You are all very brave and show all the CALS... such amazing positivity. I am not sure how you do it. A rant is so deserved. The losses you are facing break my heart. It truly has been a couple of rough weeks on here for us all. To see PALS posting right now is an amazing testimony to your strength.

I want you to know that I am going to think as strong and positive as I can... and hope for a better day tomorrow.

Rest up Chally.
 
Here's to 'New light tomorrow'!

tc
 
Chally I can't tell you how much you have given me here.

Your attitude and your incredible adventures have given much to every single one of us.

Yet underneath of course the monster has that shovel in the water and the erosion is happening and it's real.

I love you man, you rant and you know we understand and won't think any the less for hearing your pain.

Like TC - here's to new light tomorrow.
 
Well after a big family wedding that was a lot of fun I am now at home trying to rest up.
My body is like a big shovel of really good earth that was placed in a creek of moving water and just slowly little by little it crumbles away almost unnoticeable at first then more and more so as the water erodes the pile of earth down to nothing, this nightmare never stops!
Everything goes, it is so hard to keep accepting what the new me is when there is very little left. Now sister morphine is becoming my friend as my breathing is labored and the trilogy works only so well. I know this too will pass and I appreciate the place to rant some, I am sure tomorrow will bring new light.
The combo of my body failing and so many pals moving on lately is hitting hard and it's not like we're not fighting and living life to the best we can, but it does seem to be like pissing in the wind. Don't read this if your not feeling good! Dam should have said that first! Thanks family love a all chally

I am right there with you my friend.
 
Chally, you certainly have a way with words! You have eloquently captured the essence of what I am experiencing.

Hanging in there with you.

Steve
 
Chally,

So sorry you are experiencing the "erosion". Know you are not alone. Being in my chair and wearing my trilogy more and more and having a stupid washcloth in my mouth for the drooling has caused my grandsons to be uncomfortable around me. Can't hug them anymore and my freaking arms are too weak to give them a ride in my pwc. They just stair at me from a distance. It hurts pretty bad.

I think about you often buddy. I hope things turn around.

Vince
 
Hugs to all.....what a flippin beast this disease is.......might be a time for some mmj.
 
Thank you family! I know you know everything about the struggle and I really feel the strength we as a team show for each other. There is nothing in this world like you all.
I am resting ,had big va day with this not liked pulmonologist but got him to change my setting and to JUST do his job as a pulmonologist and stop trying to dx me w/ something else.
So we got some where today and tomorrow the tech guy will set the trilogy to the new numbers.
Vince I get the grandkids thing, same with me at times although one grand daughter wrote an essay about me and ALS. Broke my heart, she's 12 and has wrapped her brain around this better then most medical people I deal with.
Love you all much chally
 
Chally, you're an adventurous and bright light. And you have a way with words. Pissing in the wind, indeed.
 
Chally...you are awesome.

Prayers for you my friend.
 
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