Love · Multiple Sclerosis · Music · Ramblings · RANDOM

Wildflower

This song resonates deeply inside of me. Thank you Laurie for posting on my FB!

My favorite part of the song is…

“Be careful how you touch her for she’ll awaken; and sleep’s the only freedom that she knows”

The whole song means so many things to me..

__________________________________

Wildflower by Skylark

She’s faced the hardest times,
You could imagine
And many times,
Her eyes fought back the tears
And when her youthful world,
Was about to fall in
Each time her slender shoulders,
Bore the weight of all her fears
And a sorrow no one hears
Still rings in midnight silence
In her ears

Let her cry,
For she’s a lady
Let her dream
For she’s a child
Let the rain,
Fall down upon her
She’s a free and gentle flower
Growing wild

And if by chance,
I should hold her
Let me hold her for a time
But if allowed just one possession
I would pick her from the garden,
To be mine

Ummmm………………..
Be careful how you touch her,
For she’ll awaken
And sleep’s the only freedom,
That she knows
And when you walk into her eyes,
You won’t believe
The way she’s always payin’
For a debt she never owes
And a silent wind still blows
That only she can hear
And so, she goes

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

She’s a flower
Growing wild

She’s free…….

Love and Light ~Tracy

Multiple Sclerosis · Ramblings · RANDOM · Sarcasm

Prioritize?

Do you get overwhelmed? OMFG… I do all the time.

There are so many things that need to be done for my family and around my home. If I were MS free the shit would be over and done with. My family and house would be rockin’! It’s time for to-do lists I’m thinking. I need to put all the things that need to be done in order by priority. Then figure out how to it all…

I do not start out the day with many spoons, so I must utilize them smartly.

Need Spoons!

There is sooooooo flippen’ much clutter in my home that some places are hard to get into with my wheel-chariot. My closet has become ‘here’s where all the junk goes’ central. And, yes, I’m a bit [huge bit] of a pack rat. It’s hard to let go of things. I guess we could buy a bigger house so I can have a ‘junk’ room… Okay, back to reality!! But, that is an idea! 😛

Where to start:

  • get tax stuff together
  • go through closet and get organized
  • get salvation army pick-up together
  • get all my jewelry pieces together and clean design area
  • find someone to hangs doors and add door guards [to protect from wheelchair, lol]
  • carpets cleaned
  • front closet cleared out

Now these things may sound easy to some, and years ago I would have been done in a couple of days. Now, this stuff could and most likely will take a month or more to complete. Now all I have to do is to decide what to do first and how to get it done!!

Decisions…decisions…

Peace out peeps!!

Multiple Sclerosis · Ramblings · RANDOM

Wheelchair seatcovers…

I have had my Jazzy 600 for almost 4 years now. After a while the seats WILL shred and rip. ewwwwww

you know, you've been here

I have been searching for over 1 year for a seat cover for my chair. Due to the arms on the seat it is hard to use a basic cover. I also did not want to have to cut arm holes into the cover. During a Google search I happened to look down at the sponsored links and saw an ad for Cabela’s . I went in to their auto seat covers section and found the Cabela’s Universal Fit Bucket Seat Cover. It was inexpensive [at the time 9.99] and was mad of a water-resistant urethane. Perfect. I figured for this price cutting holes in the arms would be ok to do. To my JOY, I did not have to cut anything. It is a shell of sorts.

I know wrinkles, but when seated no one sees. lol
The back, open enough for back seat bag.

The regular price is 19.99 for one seat-cover. It is sturdy and easy to put on. I love the fact no more nasty cuts on my chair or scraping on my legs. If you need a cover for your wheel-chariot, I recommend this.

My on site review:

I have been looking for a seat cover for my Jazzy 600 Power Chair [electric wheelchair] for quite some time. No one carries them. Regular seat covers are hard due to the attached arms and wires on the chair.
I figured, the price was right for this cover and I could cut arm holes. I was so happy to see that no holes had to be cut, and it fit my high-back chair perfectly.
Will be buying a couple more so i have them at the ready.
Thanks to Cableas!

Direct link to the cover is here.

Happy Shopping!

Peace out!

FUCK · Health · Medical · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Stupid Stuff

2012 Hooray?

I’ve been asked recently why I haven’t blogged, honestly, I’m just blah! Lately not much on caring or really even trying. 2012 started out with flu going through my house. 

I have not had the flu for years thanks to my MS. Yes… thanks to my MS. My immune system is so overactive that colds and flus go right past me. The Tysabri infusions suppress my immune system, so, lucky me got sick! As we all know the flu makes ya all weak and shit. Times that by 1000. I’m already weak so the flu pretty much paralyzed me. Happy fucking joy joy! I’m trying to be positive that since the year started out so horribly, it can only get better. <insert sarcastic evil laugh> When I used to think that way I went from legs braces to a cane to a walker to a wheel-chariot. So the ‘it can only get better’ comment doesn’t mean all that much to me.

On a positive note… I’m getting a Picc Line inserted in the next month or so. My veins are pretty much non-existent and it hurts like a beotch when trying to find my veins. So this is a good thing. It’s a damn good thing I’m not an intravenous drug user! Seriously!! lmao

Now to share an amazing song my kid’s former nanny, Marilyn, hooked me up with. We are so blessed to still have her in our family after all theses years! She knows me so well, this is my song!

Hard Life – Brad Paisley

_______________________

Lyrics

Stop starin’ at me
Leave the sad looks at home
Everybody feels bad,
And you don’t understand,
It’s not like I’m alone

‘Cause everyone has battles to fight
And I don’t need your sympathy tonight

Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody does

There’s a lot I can’t do
But don’t be judgin me

I’m in a body I hate 
But I have my faith, more then what you see

So what if I can’t kick a soccer ball into a goal?
I feel like I can lift 500 pounds with my soul

Yeah, it’s a hard life
Oh, but I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does

And some like me have lost their battle
But they will be the sun that gives you warmth,
And lights the way so we can shine on

Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does
Yeah, I have a hard life but in some ways everybody does

_______________________

Love and Light! xx, Tracy

Happiness · Holiday · Multiple Sclerosis · Ramblings · RANDOM

I ‘got’ an Epiphanie!!

No, I didn’t ‘have’ an epiphanie, I got one. An Epiphanie camera bag that is.

My Canon camera bag is nice, but let’s face it, it’s more of a ‘man’ bag. It’s big and bulky and very hard to get in and out of. Being in a wheelchair it’s very hard to carry around along with my purse, phone, and well you know! lol

———————————–

From the Epiphanie FB page:

Our mission is to save cameras from being banged around in purses, while liberating stylish women photographers from the Manbag.

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Being in a wheelchair, the Epiphanie Bag is the solution for me! I can put the strap cross-body and lie it in my lap. It will be easy access AND carry all my other necessities of life. I’ll finally be able to have my camera with me. I cannot wait for it to arrive. The biggest and only problem I had on the site was deciding which one to buy! lol It took me over an hour. My daughter Ashley was the tie breaker.

The winner is:

Ginger in black

I did my research as well. There are ‘other’ bags [which will remain nameless] similar to this, but the comments and posts I read in forums, came right back to Epiphanie.

I must also thank my friend and fabulous photographer, Jen, for sharing the link to Epiphanies FB page.

I highly recommend checking out Epiphanie and joining their FB page if you are a female photographer looking for a new and stylish way to carry all your camera needs. Now, we do not want to leave the men out in the cold as there are many men who are secure in their identities that may love these as well. 😀

Drop on by, check them out, and tell ’em Tracy sent you! 😉

So there you have it… I GOT an Epiphanie!!!

Peace out!

PS: The Lyric in yellow and Lola in red I love as well. *hint hint* family and friends!! 😛

Multiple Sclerosis · Ramblings · Stupid Stuff

The Tysabri Journey

I had my fourth infusion of Tysabri today. One side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. I thought that if you made it through the first infusion and didn’t have any problems with is effect, that it was a mute point. Today I was told I need to get the test to see if I have PML. Just because I have not contracted it yet doesn’t mean I wont. 1 out of 200 people with PML and on Tysabri, could die.

uh WTF!

Kind of wish I knew THESE stats earlier. I’ll be having the test next month when I see my neuro, and am having some blood work done this week to check and make sure the Tysabri is not harming any internal organs.

So far nothing seems different. Again, I know it can take 6 months to one to see anything, but I want it now!! If I do not see or feel any difference in the 6 months, I’m done. Not worth all the risks for something that may not help. So, we shall see.

I have said all I expect and/or want from this is to be able to drive again and hold my bladder. Now, with all the risks, I want it all!!! 😛

Love and Light!

Anger · FUCK · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm

Lost and all alone…

Well, I’m still here. Not in a blogging mood lately. Hard to type and I get so jumbled that nothing comes out right. I’m just glad that I’m fantastic when it comes to ‘acting’ happy. I’m so tired of all the, ‘life is good’. ‘you are in control’, and blah blah blah. MS took away my ‘control’. Please don’t tell me it could be worse, as it is getting worse. I’m sure others hate their illness just like I hate mine. I think boredom sets in and i get depressed. Unless you live in my ‘chair’ in the prison that is my home, you cannot understand. Being trapped like a caged animal is paralyzing…

I know some of my friends know this feeling as they are in the same boat as me. I try to find the good and be upbeat. I can tell you that it takes a ton of energy to do that. I’m so tired of fighting this battle.

that be me...

 If I sound bitter, it’s because I am bitter. Life is NOT good… no always. Some of us fight struggles that no one can ever comprehend. Those are the ones that usually say ‘it could be worse’. **F bomb alert** Well fuck them. Their biggest problem is a job they hate or the sniffles. If I sound bitter, it’s because I am bitter. And as for prayers, do NOT get me started. My girl Ruby and I were told if we prayed right we would be healed!! Well hot damn, I’m on my fucking knees. I have no problem for those why want to pray for me… just don’t be surprised when it doesn’t work.

Hopefully this’tude’ will pass soon. It usually does. But, I’m not going to feel bad for being pissed, angry or bitter anymore. There are some that make me feel like I should just ‘get over it’! To you I say, ‘Let’s trade lives.’ To anyone out there dealing with chronic illness and any of these feelings, just know it IS ok to feel this way and vent. Do not let anyone make you feel bad if you do. Until they walk, err roll, a mile in my [our] chairs they can just STFU!!

Peace out!

Multiple Sclerosis · Ramblings · RANDOM

In Sickness and in Health

Dedicated to my husband…
When I heard this song by Chris Medina and watched the video of his beautiful lady, I knew this song was meant for my hubby.
I was diagnosed with MS three years into our marriage, right after the birth of our twins. Now wheelchair bound with many other issues due to the MS, my husband stays by my side.
I am one of the blessed ones…

Anger · Multiple Sclerosis · Ramblings · RANDOM

Stupid things STUPID people say…

“Be glad you are not in a wheelchair due to a car accident or the like. There are many paraplegics in wheelchairs because of this. This is something they did not ask for.”

This was in response to someone in a wheelchair due to illness. I was like WTF! Are you insane or just ignorant. This person needs a lobotomy… or maybe they have had one already. Do they think we asked for the illness that put us into a wheelchair? I feel as awful for those in accidents as I do for myself and others with a crippling illness!

Really people, think before you open your stupid mouth!

Really??

I’m out! Peace!