Archive for the ‘falling’ Category

Already dead

Because I’m already dead
You can see it in my eyes
I’m already dead
I can tell no more lies

My body is broken
my pain is so real
I can’t hold on anymore
My body won’t heal

Because i’m already dead
Can’t you see it in my eyes
I’m already dead
there are no more lies

The truth has come out
Please take me home
There’s no more to be done
My soul it is gone

Because I’m already dead
I will never be free
I’m already dead
Someone please help me

Song/Lyrics @ Tracy Radford

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done

 

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

OMG…this says it all! In tears reading this. WOW! Someone does understand! Although I am not able to walk anymore, it was exactly like that when I was.

What living with MS feels like..:

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

1- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

2- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

3- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

4- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

5- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

6- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

7- Tingling: Stick your finger in an electrical socket – preferably wet.

8- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

9- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

10- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

11- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

12- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

13- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz

14- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

15- Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

16- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

17- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

18- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

19- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

20- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

21- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appear.

22- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

23- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

24- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

25- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

26- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

27- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

28- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

29- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

30- Swallowing: Try swallowing the hottest chili pepper you can find.

31- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.

Then Finally…

32- After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

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Peace!!

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She is falling, her dress flies all around her, she sees no end, not stopping, no slowing down. Visions pass by her eyes as if she is seeing her life all around her. Pictures in her mind of days long ago. Smiles, laughter, anguish, fear, so many feelings. Faces she remembers, faces that have no meaning. Are they of people to come or of those from a past time? Falling still, has time stopped or just slowed down to let her see. She reaches out to certain pictures, places she wants time to stop and bring back to her. The dress tickles at her face as it flows around her. She cannot help but laugh.

Faster, faster she falls. It is much to dark here. Fear hits, she can feel the blood flowing through her veins. No more laughter, she wants to stop falling. She cries out, no one hears, no one is there. The faces she sees flying by her are no longer smiling. They’re distorted, angry, scared. She closes her eyes, no longer wanting to see. Two words go over and over in her mind… ‘Save me!’

© 01/16/2010

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I went to my neurologist yesterday. Every time I go, I think part of me feels that this time will be it. There will be a new medication, a cure. See, sometimes I do think positive thoughts. 🙂 But, alas, not. I am falling more on my 18.2 foot trek to the potty with my walker. I spoke to him regarding a medication I have been reading about, Low Dose Naltrexone [LDN]. It is a medication used for drug overdoses, addicts, etc. in high doses to help the addiction or jump start the heart from od’ing. In small doses [1.5mg – 5mg] it has been found to help the sxs of MS, Fibro, and other autoimmune disorders. It brings the endorphin levels back to normal which help the immune system to recover and do what it is supposed to do. It is not a cure, nor does it reverse the damage already done by these disorders. But, It has been found to slow or in some cases stop the progression of the disease.

I printed out all the info I found and gave it to my Neuro. It is not widely used in the US as of yet. He is going to do some research into this, contact a highly regarded pharmacy, and hopefully get me started on it at a low dose to see if it helps me in any way. Since our insurance has changed [shitty blue cross] and we have to pay almost 3500.00 out of pocket until full coverage, we have to be careful what I try. He offered me a clinical trial for Tysabri, but that medication still is not my drug of choice. And the side effects scare the crap out of me. So, we will see what we can do about the LDN and take it from there.

I do not expect any miracles…but it could happen!

Thanks to Kathy for the heads up on this medication [LDN].

Blessing and Hope!

So tired…

Posted: January 14, 2010 in falling, Fear, multiple sclerosis, Pain, Ramblings
Tags: , , ,

of falling…

Does this mean I should use my Wheel-chariot all the time? No, no, no… I can still shuffle 18.2 feet. I will do that until I cannot any longer. But it hurt today. Did not hit my head, but landed hard on my back. Medication, sleep.

Short and sweet today… good night!

Blessings and Hope!