Unleash the flying monkeys…

July 13, 2016July 13, 2017 Tracy1 Comment

Just when things seem to be getting better, BAM, it hits the fan. This why I can not ever be the shiny happy positive person others want me to be. And I try, but fuck a lot of that!

Unleash the flying monkeys!!

I’ve left 2 messages for my primary care doctors office manager. My doctor turned a specific issue I’m having over to her. We spoke when I was at my doctor a few weeks ago and she was supposed to get back to me. Nothing, nada, nil. I’ve called twice and left detailed messages for her to please call me back. And, I used my nice phone voice. Nothing, nada, nil. The issue is quite a big deal for me. What has happened in the last 30 years when it comes to doing what you say in the workplace. FUCK!!

Unleash the flying monkeys!!

Now, to get my pain meds, you always need a scrip every month, no refills… all thanks to the wonderful druggies out there that abused the medication, and the doctors dumb enough to believe them. Normally I go pick up the scrip at the office with a quick check in every month. So, I called yesterday to see when I can pick it up, and they said they’d talk to my doc and call me back. Bahahaha, you guessed it, no call back. I’ve been going to my neuro for 19 years. WTF. So I called back and they said my doc will be calling me back. I have a real illness that causes real pain. To bad I can’t fake it, maybe then I’d get the medication I need. FUCK!!

Unleash the flying monkeys!!

Why, just why… Come on Universe, cut me a fucking break. I have an aggressive form of primary progressive MS. NO treatments available to me. I’m bedridden with double stomas, degenerative disc, muscle spasms, tremors, constant numbness, and unable to do basic things like roll over in my bed or even sit up. I deal with severe anxiety and depression, complete and utter loneliness. What fucking more do you want from me? Sometimes death sounds very inviting.

Unleash the flying monkeys!!

But, fuck you, I’m not a quitter. And now I’m just pissed off. Do not mistake my disability for weakness. My mind still works and is smarter than you. Look out, here I come!!

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

My Favorite FairyTale

July 12, 2016 TracyLeave a comment

Oh what a World…

fuckuend

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

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!

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

“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…

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!!

Craziness · Health · Ramblings · RANDOM

Hope is in the air.

October 27, 2015October 27, 2015 Tracy4 Comments

I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]

I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!

This month my neuro and I decided I will start Tysabri infusions again.

I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.

Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.

I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.

I GOT THIS!!

Craziness · Fear

Losing my mind

August 19, 2015August 19, 2015 Tracy4 Comments

Since my last surgery in May this year, Im actually becoming “Tracy” again. I’m gaining back some strength and actually getting out of my ‘prison’ occasionally. I know I’ll never walk again, but if I can transfer on my own I’ll be happy.

Now here’s the kicker…when I start feeling even a tad bit good, I tend to over-do-it. Badly… I want so bad to be ‘me’ again I push it too far.

Some say the face of MS is invisible. For the majority of people with MS it is considered the invisible disease. But, for 5-7% of MS’ers I’m also the face of MS. The face no one wants to see or think about. Bedridden, wheel-chariot user, pain most can’t comprehend, and my MS list goes on. I’m the dreaded [badly] progressive form. So when I feel ‘good’ I want to do all the things that get put off. Then I crash and burn. And alas, I’m crashing.

I will get the rest that I need for a few days. I pray it’s only a few days. My last crash landed me in Hospital and then a 3 month depression. People, even some MS’ers, can’t comprehend the terrible pain and loss I have had. I hope with all my might they never have to.

Today I knew a ‘crash’ was coming, but I will no let it kill my spirit as I have in the past. Shit, my friend Stephanie won’t let me. Right this minute though I feel like I’m losing my mind. And, yes it’s spelled losing, NOT loosing! A huge pet peeve of mine. Sorry, I went off track a smidgen. 😉 My sleep is back to noooo sleep tonight. Muscles spasms and shakes are taking over my being. I think Aliens are coming for me to do some probing. Although, that may be fun…hey, it could happen. Now I really am losing it. Lack of sleep will make you insane. Trust me I’m there.

Now I will sit here in the dark with the light of my MAC illuminating my room. Will I ever find my peace, my center? I do not know. But, I will always be searching for it.

Peace!

Craziness · Ramblings · RANDOM · Silly · Stupid Stuff

Ask Me!!

May 5, 2014 Tracy23 Comments

So, my friend Steph wants me to do an ‘Ask Tracy’ sort of thing. For some reason she finds me funny and refreshingly errrr, brutally honest.

Right now I’m pretty much bed-ridden, a prisoner in my own body. The boredom is making me a bit nutty… Even more so than normal. lol So I thought this could be fun.

So, if anyone has any kind of question, ask me in the comment section of this post. Remember, I am brutally honest, so if you do not want to hear/read what I think, then do not comment. 😛

Craziness · FUCK · Ramblings

Life, it is what it is

December 3, 2013 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]

Anger · Craziness · Family · Fear · Health · HELL · Hope · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM · Stupid Stuff

Just thinking out loud

August 25, 2013August 25, 2013 Tracy5 Comments

Things I can’t do anymore:

dress by myself, get out of bed, go to the tinkletorium, drive, walk [duh], sleep on my side, lift myself up, use the stove/oven, go out in the sun, put on shoes, garden, laundry, vacuum, travel, cook, hold my bladder 😉

Things I can do:

sleep on my back [boring], watch endless amounts of tv/dvds/netflix, use the computer, manage our money, sleep [I’m the pro], love, hope

I know I’m in a state of limbo right now. Not sure what to do or how to do it. Knowing is the first step. Coming out of it is the hardest step. I’ll get there…

Love and Light

“Knowing you’re falling is the first step to getting back up” – T Radford

Anger · Craziness · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm · Silly

Are you freakin’ kidding me!

August 6, 2013 Tracy2 Comments

Another sleepless night here at Casa Radford! When this happens my mind cannot quiet down. After watching some eye candy on The Vampire Diaries, namely Damon, Klaus, and Stefan, crazy thoughts went flying through my head. Get your mind outta the gutter!! lmao

Things that irritate me:

Chewing with your mouth open

People who can’t put down their cell phones when visiting. RUDE much. Stop freaking texting.

Those who answer a question WITH a question.

People who complain about getting fat, when the only thing ‘fat’ is their head!

Dealing with idiot nurses at my neuro’s office.

Angelina Jolie’s lips. Get that woman some Chapstick for fucks sake!!

Dark thoughts:

Anxiety strikes when I can’t sleep and depression sets in, then anger, then craziness. I go from crying, to wanting to just punch someone in the face, to giggling. Time for the huggy jacket! [in black please with silver studs]

Psycho Babble:

The next thing I know is I’m singing songs in my head. I find myself rockin’ out as I’m lying down. Hmmm, this is exercise for me. 😉 Then I ‘write’ down, in my mind, what my next blog will be. It always sounds better in my head then when I actually start typing it out. Although they don’t make much sense either way. I think sometimes I might be a tad A.D.D… Oh look, a shiny penny.

What I will say, is that being in my head can be fun. Being a tad off is much more enjoyable than being ‘normal’. I’m also kind of lucky. I may be trapped i a body I hate, but I still have a window to outside world. I have an awesome adjustable king size bed, a cool hospital type table on wheels for my MAC [my link to life], and a huge TV on my wall with wireless capabilities [Netflix, You Tube, etc.]. I’m pretty spoiled by my hubby. He’s all right… for a guy! 😛

Until next time.

Love and Light