Tag: Fear

Anger · Craziness · Fear · FUCK · Health · HELL · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Strength

Too much of nothing

Tracy7 Comments

I started this blog with the hopes of chronicling my MS and my thoughts, etc.. Im realizing that with Primary Progressive MS, there is not much to chronicle. There are no more medications for me to try; hell there are no medications for PPMS. Wait, I’m lying. There is ONE possibly coming to a drug store near you, winter of 2017. But, not for me. Yes, it will be the first medication for PPMS, but I don’t qualify. My EDSS score is too high. I’m between 8 and 8.5. In other words, I’m too far gone! Well okay then.

I sit/lie here 90% of the time. I’m not even sure where I’m going with this entry. I’m not even sure why I’m even blogging it. Maybe out of boredom. I guess this is my personal diary that I just happen to share. A place for me to come back to and ‘remember’, the good and the bad. A place for me to vent. A place where I can say whatever the fuck I want.

I just wish I knew how to get my thoughts out of my head and onto here. A jumbled crazy ass rollercoaster is the only way to explain my thoughts.

“Outlook is grim”, has been the description of two doctors regarding my life now. Well no shit… But, did you have to say it out loud!! RUDE much. 😛 And, I know I know, anyone can die at anytime. They could walk out of their house and get hit by car. I get that. That would be easy. We start dying the minute we’re born if you want to get technical. Picture yourself  lying in bed 24/7 while your body slowly but surely dies daily from illness. It’s not for the weak. With PPMS, there is NO cure, NO remission, NO parole. So, the next time you want to use the ole. “well anyone can die just from blah blah blah”…don’t!! Above all… DO NOT compare one illness to another, especially if you, yourself, do not have said disease. You will never ‘get it’ unless you ‘get it’!

Scary part is that sometimes I really believe I’m going a bit mad. Seems par for the course…

madhere

Craziness · HELL · Hope · Multiple Sclerosis · Music · Primary Progressive MS · Ramblings · RANDOM

I’m Alive…

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

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

The MonSter…

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.

Beotch!!
Beotch!!

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! 😛

my mantra
my mantra

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!!

Craziness · FUCK · Ramblings

Life, it is what it is

Tracy6 Comments

After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!

They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!

I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.

At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!

Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!

For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.

I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!

Fear-Pain-Anger-Depression

I really do wonder sometimes… What’s the fucking point!

[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]

need sleep...

Fear · Hope

What if…

Tracy12 Comments

I cannot sleep. Hubby is sleeping peacefully beside me softly breathing. I am sitting here with thoughts flying all over the place. What if  the medication doesn’t work? What if it makes me sick? What if I get the bad side effects? Then back to, what if it doesn’t work? I have waited for so long to find something to help me. I hate my wheelchair, I hate my non-working body. I hate MS!!! What if it doesn’t work? I’m so scared right now. I’m not expecting a miracle as those do not happen to me. I try to remain strong, be positive, keep smiling, hide the real pain. I’m afraid what it will do to my psyche if it doesn’t work. Will I find the inner strength like I always do, or will this be where I finally say no more? What if it doesn’t work and they cannot find anything else for me? What if by the time they do I am too far along in my disease?

This is an overwhelming feeling for me to be so full of fear regarding myself. I usually can put on the happy, silly, sarcastic Tracy face and keep on plugging along. But this, this is a huge breakthrough right now regarding walking for those with MS. I’m not complaining, I’m scared. I have a roof over my head, my hubby has a job, my kids are taken care, so I’m not complaining. I’m just scared.

What if...

It’s almost midnight here and my back is burning in pain, I can’t sleep as way too many thoughts are floating around in my head. My back pain will subside thanks to my meds, so I’m not complaining. I’m just scared.

I want to walk again so bad I can taste it. I know I cannot expect it to happen fully for me as my legs are pretty much useless, but even some strength back would suffice. OK!! Bullshit, I want it all back, but I have to be realistic. I’ll still have the fatigue, degenerative disc disorder, tremors, weakness, migraines, and all the rest of the joy that is MS. Even a little leg strength will help. Right? Then I think will walking even matter? I do not remember how and with my hyper-extended knee will I be able to? Shit, I need to stop over thinking don’t I?

I guess tomorrow, err today is another day…

Blessings and Hope!

Fear · HELL

Fear…

Tracy12 Comments

My Radiology reports are ready to be picked up from the Hospital. Roger went to get them as I cannot go near that place. I get chills even thinking about it. Is this was fear feels like? I have felt fear before for tangible, reasons but never for thoughts going through my head.

make it stop!
make it stop

My sleep is off, I wake up nightly from nightmares. WTF!! This does not happen to me. Getting to sleep is hard enough with all the thoughts running through my head. [yes, I do think occasionally] 🙂 Forget about falling back to sleep after a hospital nightmare. It is the same one here, almost nightly with small differences. So not cool!

I’m not sure what to do or where to begin anymore. My MS counselor got me on track with making a list. So, yesterday I made a list of to-dos regarding what I want done due to this terror. As I do them I am checking them off. It did help a bit to calm my mind, but then it comes back at me like a locomotive.

When diagnosed with MS it took so much from me. I fought, and fought hard to regain some of myself from it. After this horrifying experience, I feel like I am right back there again. When will it get any better? Will I ever go back to me?

Blessings and Hope!

**Update – Got all the films, but no written report that WAS asked for. REALLY!! WOW!

Fear · HELL · Multiple Sclerosis · Ramblings

In Dreams – Hell Hospital

Tracy9 Comments

Due to my Hellish Hospital stay, I think this dream says it all. I have been having it more than I would like to.

She slowly wheels her chair down the corridor, doors pass, she can hear the laughter, she follows the sound. It is getting louder, the laughter, the muffled voices, she is getting closer, she is at the door. People in scrubs all around, faces lost, standing around the bed, someone is in the bed. She is crying through the sounds of laughter. Her face is cloudy, her face is coming clear. She is no longer in the wheelchair, she is in the bed, crying. Please someone help me…

©February 6, 2010

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Blessings and Hope!