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

Unleash the flying monkeys…

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!!

Too late!! mwahahaha
Too late!! mwahahaha
Craziness · HELL · Hope · Multiple Sclerosis · Music · Primary Progressive MS · Ramblings · RANDOM

I’m Alive…

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

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

MS and a Cure?!

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!

Always hoping
Always hoping

Peace!!

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

The MonSter…

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!!

FUCK · Health · HELL · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

MS and the Losses We Suffer

Facebook has brought me together with some fabulous people who battle the MonSter with me. Heather Leffel is an amazing young woman who shares so much of herself and of the struggles we, fighting MS, go through. Recently she did a video on “MS and the Losses We Suffer“. Together, with Kate Milliken, a video was compiled of excerpts from people suffering from MS [all types] and the losses they have experienced.

I am honored to be a part of this amazing project! I believe the Universe sends us messages from time to time, when we truly need them. I have been going through a very rough time as of late. I was losing hope… Then, BAM, the finished video showed up on my FB feed. As I watched it through my tears, I felt the hope returning to my soul. I was so inspired by those who shared their hearts.

So, without further ado…

 

Craziness · FUCK · Ramblings

Life, it is what it is

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 · HELL · Multiple Sclerosis · Strength

It is TIME!!

I have been hoping that the hell hospital would actually care about how I was treated there. Not so much!! Yesterday I received a letter from their Director of patient and guest relations. A basic, “We are sorry we did not meet your expectations, the nurse has been spoken to, and in the future we hope to meet your expectations.

click on letter to enlarge

I never even spoke to this person and she didn’t seem to feel the need to contact me personally. I have not slept a full night since my time there. I cannot leave my home. I can barely exit my room. I have been living in my pj’s and sleep most days since my nights are full of bad dreams. Here is the new one from last night:

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

As she awakens she feels pain, her arms sensitive to the touch. She looks down and sees small blood ‘spots’ from all the IV’s that did not work. Please no more. They laugh at her from the end of her bed. Their laughter is deafening and she wants to escape. Her wheelchair is no where to be seen. She drops to the floor and tries to crawl away from them. She feels hands all over her body, pinching, blood, laughter. Their faces are hidden by shadows, she closes her eyes so not to see. Wake up she tells herself, wake up, it’s just a dream, they cannot hurt you anymore. But like monsters under your bed, they will never leave. She opens her eyes, they are gone, she falls into the darkness…

March 5, 2010

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

That one woke me up around 2 am. Falling back to sleep was impossible. I feel so lost.

All I asked was that they find a way for people having these types of procedures to be allowed a private area for the cleansing process. To re-train nurses for IV insertions. To take care of my part of the bill for my hellish stay. [which is not going to break their bank] Not to charge my insurance for the 1st colonoscopy that they knew would not take and the IV insertion that was not even in my vein. I was told that someone would get back to me and my concerns would be taken to the proper sources. This was on February 22, 2010. Yesterday, I assume, was my answer. A generic, Sorry.

I have left message for two Attorneys thus far. I did not want to have go here, but they leave me no choice. I guess they figure people will give up as they do not have the time, the energy, or the support. Well, I have the time, energy [maybe not], support, all kinds.

Blessings and Hope!

Health · HELL · Multiple Sclerosis · PAIN · Strength

Hell Hospital – Part 5 going home…

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

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

Once back and settled in the nurse came into her room and said she was discharged. Her last meds were an anti-D, tummy pill, and a uti pill. Since she was discharged, no more for pain. And she was in some pain. The nurse tech, K, brought her some jello. [had not eaten much in 3 days and was starving] She had asked for, at least, a soft meal before she had to leave. Finally a meal, a regular meal, was brought to her. She had a few bites, but it was making her a tad ill. What part of soft meal did they not get? Bottom line, she was discharged so they could give a shite. After a mix up over a facet block she had thought they were going to do for her degenerative disc disorder, she just wanted out of there and fast!!

Her hubby had to go back home and get their van and her WC. Once he got back, he packed her up and got her into the WC. They said it would be a few before someone could take her out. ROFL!! NO NEED, I have my own chair and am out of here!! Her hubby could not roll her out fast enough.

When she got home she fell into her bed asleep for 6 hours. Upon awakening she had chills, skin crawls, and fear. Withdrawals from 6 days of Dilaudid IV injections every three hours and no weaning down, just sending home. It only takes 3 days to cause this and she was on it for 6. She wanted, needed more. She had Dilaudid pills so she took one along with a Xanax to calm her nerves. After some research on her hubbies part, he found out that Valium is used to help withdrawal sxs from this type of medication issue. In her case, she was lucky. Due to her MS she had Valium to help her sleep when needed. She took it from Thursday night until Monday morning for the withdrawals to finally subside.

Her issue is this, what about those that do not know this or have help for it? Even with the Valium it was a very scary feeling. How can a hospital, any hospital send people home without weaning medications down?? Irresponsible.

But that part of her nightmare was over, she was out of Hell Hospital, through the withdrawals, and home with the people who love her. She felt lucky, but what about those who do not have the support? What do they do? Who helps them through?

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

This is the reason for these blogs. I will not back down and they will have to make changes.

I have spoken to the hospital representative and the head of nursing. I’m not sure what they think. They have not contacted me to let me know if anything is being done. I WILL be contacting them back as this is not going to go away. De-humanization, incompetence, and straight out uncaring service should never be tolerated. If I have to talk to the Head of the hospital, I will. If They need me to come in because S says it is not true, I will come in and face her with the truth. I am not under medication anymore, I am still having issues in my heart with the treatment I received, but I will face anyone who says it is not true. The truth WILL prevail.

I am finding me way back day by day. Will I ever be the same ‘me’ again, no. Being de-humanized takes part of your soul from you. Does this make me a weak person? NEVER! I will be strong with the truth and will do anything I need to do to stop this treatment. I will take this all the way.

I just want the ‘nightmares’ to stop…

Blessings and Hope!

***NOTE – my Dilaudid pills have been crushed and put into used coffee grounds to soak the med out and thrown away. After taking the one at home, I wanted them gone!

Health · HELL · Multiple Sclerosis · PAIN

Hell Hospital pt.4a the Colonoscopy [2nd and last time]

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

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

This is the day I have dreaded. This is the blog where I will be ‘naked’. We will call the nurse tech in question ‘S’, so as not to use names. This blog, again, may have some TMI moments, so do not read if you cannot handle it.

And remember, “My tears are not a sign of weakness!”

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

She was wheeled back to her room in her bed and slid back into the bed 4 slot. Her minded raced as she knew she was going to have to go through the another Colonoscopy tomorrow morning at 8 am. She also knew this meant drinking more of the cleansing drink. Bed 4 was the first bed on the right as you walked into the room. No one was in the bed 2 slot, so she asked to be moved to there as it was by the window and had a bit more privacy. The commode could be put against the wall, not next to a person’s bed, and she would be far from the door there. The nurse checked and said they would move her. She asked for them to roll her bed to the spot. One of the nurses asked why she could not just walk to the bed there already!! OK, Really! What part of, ‘I have MS and am unable to walk’ haven’t you understood since I have been here 5.5 days already!! Needless to say, the rolled her bed from bed 4 to bed 2.

The nurses got her all set up and moved her things over to bed 2. Commode against the wall, far away from all. In the bed next to her was a pregnant woman, approx 34 weeks. This confused Tracy completely as the hospital had spent lots of money in the previous years for a fully equipped Maternity ward. Not enough room at the Inn, so they shove this poor girl in a ward with sick people. [Tracy still scratches her head over this today]

On her mind now was getting mentally ready for the ‘drink’. She told the nurses in no uncertain terms she would NOT drink the go lightly!! She wanted the sour tasting drink from the 1st night she had to cleanse. It was not much better, but it was less to drink and she could stomach it.

There was one amazing moment, when her husband brought her newly 16-year-old son to visit her. She was in the hospital on his birthday [Jan. 31] and they would not let him in as he had no ID saying he was 16. He’s only 6′ tall and looks every minute of 16. Somehow daddy got him on this night. Even sitting on the commode, covered up, her baby hugged his mommy and told her he loved her. This was the one light in her stay. They only stayed for about 10 minutes as it was getting late, but that 10 minutes was worth a lifetime!

She had drunk the drink a bit before her hubby and son had come. Her cleansing [she thought] was pretty much done. Strangely, she was still not running clear. For a moment she smiled and laughed to herself that when the next time someone told her she was ‘full of shit’, she could say ‘yup I was’!! 😛

Her neighbor across the way awoke and started vomiting, badly. She grabbed the call button and told them that the woman needed help now. After a few minutes, she hit the button again, this time not really needing it as she is sure the whole floor heard her. GET IN HERE NOW, SHE IS SICK AND SEEMS TO BE HAVING A HARD TIME BREATHING!!!!! They finally came and helped her. Tracy was pissed off and disgusted by the treatment she was receiving and the treatment of others. She heard a man’s cries almost everyday for help. Was she in a horror movie, where were the cameras?!

At this point she was exhausted and figured she could finally get off the commode and go to sleep until the next day. She cleaned herself, got into the bed, and fell asleep.

She awoke in complete terror and humiliation. She thinks it was around 1-1:30 am or so. She knew she could not clean herself this time. Tears streamed down her face. She knew she had to hit the call button, but how could she? She was horrified and shaking. How could this be happening to her? She slowly reached for the button and pushed. A voice asked her what she needed and she said she needed some help. She could feel the burning and finally S came in to the room, to her bed. She quietly told S that she thought there was a problem. As S removed the sheets and protector covers she knew there was by the sound from S. S would have to go and get some things to clean her. She heard S making a gagging noise and a eeech sound as she walked from the bed.

She tried to hold back the tears from flowing, but after that she was fighting a losing battle. She kept apologizing as she felt so de-humanized and humiliated by this person. S came back with a bucket of warm water and cleaning cloths. She haphazardly wiped Tracy down quickly to get her off the bed and back on the commode so she [S] could clean the bed. As she got on the commode she took off her gown and fumbled with the snaps on a clean gown so she could put the new one on. S was more concerned with getting the bed cleaned than getting Tracy cleaned.

Again, she apologized to S. The comment back stung in her ears, ‘Well there is still a lot more to clean!’ Tracy took some of the wipes she had and tried to wipe herself in the spot she knew S had missed and was not planning on re-doing. By now she knew she would not get back into that bed. The fear was too much for her to handle. Once S got the bed made she asked her to help set up her MAC on the bed so she could play games as she did not want to fall asleep again. S leaned over Tracy and they grabbed the MAC and set it all up. Tracy was not to see S again!

The next thing she remembers is waking up on the commode [3:45am approx], legs numb, pain in her back, and her game over. Her bottom was burning from the negligent cleaning S had done and she reached gently for the call button. S did not answer the call, but the RN did. She took one look at Tracy and went and got a new bucket of warm water, cloths and ointment. She gently helped her to her feet, leaning over the bed and thoroughly cleaned her. Her legs, her lower back, her bottom. Then she applied and ointment to the burning area. Tears fell from Tracy’s eyes, she felt dirty, De-humanized, humiliated. The RN’s were not supposed to do this, but S never returned. [probably better for S not to return!]

After she got her all cleaned up, the RN got her back in to the bed, and gave her something for her pain. She tried to fight sleep, but she could not.

She woke up to a new batch of nurses, shift change. The NT she liked, K was there. Again, still not running clear, so time for a fleet enema. K was caring and compassionate and helped her through it, and cleaned her when needed. They had postponed the procedure from 8am for about 30 mins or so. After the fleet and a warm water enema, she ran CLEAR!!

This time a gurney came for her. They asked her to scoot over to it… Really!! I’ve been here 6 days now and you still do not get I need help doing this. OMFG!! Finally, with help, they got her on the gurney and headed to the GI part of the hospital. The two amazing nurses she had the day before were not on her procedure. She was very sad by this. When they came in they change the chart so they would be in on her procedure. This made it things so much better.

The next thing she remembers is waking up and the GI nurse telling her it worked and all was good. She was so relieved! They came and took her back to her room. By now she was hurting and a bit thirsty and hungry. Almost directly after she got all settled in, her hubby got there the Nurse came in and said she was being released. Nothing for pain, no food…

**to be continued**

Blessings and Hope!