I’m Alive…

April 20, 2016April 20, 2016 Tracy1 Comment

Story Of The Year – I’m Alive

My amazing daughter Ashley makes me some awesome mixed cd’s. This song resonates deeply with me. It’s about transformation. Don’t want to spoil it for you. It’s a great video and very powerful on all levels for me. While his transformation is not mine [ahem], my MS feels like this to me. It has taken over my body and soul and I’m ‘fighting’ to stay alive in a prison that is my own body.

The words are so powerful!

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“I’m Alive”

In the night I sit alone
Lifeless to the world I know
Faith loss long ago
In this graveyard I’m calling home
Carved into the stone
A diary of broken bones and
Words I should’ve known

But this grave’s too deep to ever make it up
I’d do anything, anything
Just to feel like I could reach the ground
I’d do anything, anything now
To spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
So drag my lungs into the ground
Lay me down

In the night I sit alone
The stars rain on the world below
Beg me to explode
But these dreams I keep are nowhere to be found
I’d do anything, anything just to stop
This weight from pressing down
I’d do anything anything now
To spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
So drag my lungs into the ground
Lay me down

Deep enough so that I’ll never feel again
Far beneath any chance at breaking skin
I’m giving in
All the promise of smiles and happiness
That’s a dream I’m not willing to admit
I’m not ready yet
To face regret
No I’m not ready yet
I’m not ready yet
No..
No..
No..

I’d do anything now
So spread these wings somehow
I scream these words so loud
But they never make a sound

I’m alive
But I’m barely breathing now
So place my heart under the ground
Lay me down
I’m alive
But I’m barely breathing now
Tread my lungs into the ground
Lay me down..

******************

Peace

Health · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

MS and a Cure?!

April 7, 2016 Tracy4 Comments

To start off, I must say that this blog is based on my PPMS and my experience with it. While some may dis-agree, please do so in an adult manner. I will not downplay your feelings, so please do not downplay mine. With that being said…here goes.

At this point there is NO cure for Multiple Sclerosis! None, nada, zip. Eating healthy and living a clean lifestyle will help, but it will not cure. There are medications to slow the progression, but not stop or cure it. This year a new medication is being released [finally] to deal with the progressive forms of MS. While this is excellent news, it won’t do much for me as significant damage has already been done to my body.

A ‘cure’ in my eyes will be able to help all types of MS, not just the least severe forms. It will also be able to replace the myelin and help to restore nerve functions. That is a cure. While stem cell research has shown to halt MS, there are no long term stats yet to show it will stay that way. But, I will say, if I could afford it i’d be all over it. The sad part is I may not even qualify for HSCT due to the severity of my damage. So, in my eyes, not even close to a cure. A cure should be able to help everyone with the disease. IMHO… which isn’t so humble.

I believe in a cure… But, until people see humans as more important than money, we won’t see the cure! There is no ‘profit’ in a cure. And that is the sad reality!

Peace!!

Craziness · Family · FUCK · Happiness · Health · HELL · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm

The MonSter…

April 1, 2016 Tracy4 Comments

MS is an evil bitch! For the first time in a very long time I’ve been feeling “happy”. I haven’t felt this way in quite some time. I learned many years ago to downplay my emotions. It always seemed to go bad when I’d mention the “H” word. lol Like the other shoe would drop if I even thought of it. And, BAM, it seems to be par for my course. The MonSter, that is MS, always jumps in to harsh my mellow. And the bitch is jumping on a trampoline right now. I’ve been doing pretty good. Home Depot is going to get my window issues fixed [knock on wood] and life in general is good. So, I should have expected something to happen. I always expect the worst and then when the best happens I get giddy. 😉 I know that seems like a bad way to look at things, but for me, it keeps me sane. Well, I tried looking for and expecting the best this time, and damn if MS didn’t pop up and mess my shit up again. I was actually feeling less fatigued and wanting to do things. But, no, she had to pop in and remind me of my ‘disability’. I’m feeling drained and out of sorts. Depressed and tearful.

I hear the saying, I have MS, but MS doesn’t have me, all the time. But, um, nope… MS does in fact have me. For me it’s all about how I handle it. I can fall apart and give in to it, or keep fighting. I chose to fight. I have PPMS [primary progressive]. My MS is no longer ‘invisible’. It’s out there and in your face visible. I am in the 10% group with my PPMS, and many have no idea there are different types of MS. This page, here, quickly explains the types.

I’ll get through this and keep pushing forward, but sometimes it gets so frustrating. I’m going to throw my pity-party for now, and everyone is invited! 😛

Now I am going to try and find that ‘happy place’ again. I may have lost the battle to MS, but I will win the war!!

Peace!!