Category: RANDOM
Games people play whilst painting
I know, two blogs – one day.
Just a mellow check in. lol Mellow, as in me… mellow. Listening to an amazing mix my daughter Ashley made for me. Playing games on FB. I found some I forgot I had. Bubble Witch Saga for one. It’s fun. I’ve been playing it for over and hour. It has me mesmerized.
It’s 1:30 am and, as usual, no sleep in sight. To medicate, or not to medicate? That is the question. At this point, I’m not even sure of the question. Are you? Doubt it.
I really need my room painted something other than white. Some fun colors to match my personality. And no, not black. lmao Although…
My daughter Shelby is itching to paint the interior. I explained the concept of money to her, and explained that we have none. 😛 Yet, it would be a nice change for me. Believe me, I need some change. Feel free to donate to, the help me paint house fund. [donate button on the left] 😉 I actually want my room in pale grays/blue colors. Muted and simple. The rest of the house in light mochas. The girls painted their own rooms in the colors they wanted. Turned out wonderfully. The boy hasn’t painted his room yet. I’m thinking black. Just kidding… or am I.
I’m kinda thinking being up most of the night is okay for me. Not sleeping may be the way my mind is protecting me. Let me explain; during the day people are bustling. I hear cars going by and read about fun things people do. I feel I’m missing out on life. At night, my house is quiet, the road is quiet. Most are in bed, like me. So, by sleeping in the afternoon, I sleep through the sadness of dreaming of lives I will not lead. Being awake at night, the house is quiet, the road is still. I can take it all in and not feel broken. I know, it sounds quite mad. It’s just hard to put to words. I’m not even sure what I’m trying to say. go.figure.
Do you ever hear a song that takes you back to a time and place forever in your heart? Does your heart ache? I literally either cry for a loss, laugh at fun time, or get ‘oh Hell no’ angry. lol Listening to music is one of the things that keep me sane.
2:15 am and all is Unwell. Love that song.
Back to my games! Peace!
Too much of nothing
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…
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!!
My Favorite FairyTale
Oh what a World…
This…
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
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.
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!!
HAPPY HALLOWEEN!!
Have a fun and safe Evening! Keep your furbabies safe and away from opening doors.
****************************
Last night was the pumpkin carving party at Don’s house. Here are the wonderful pumpkins that were carved. It was a fun time for all.
I started out dressing like a Vampire, but the wig cap/wig gave me a headache. My fitted Vampire teeth were a pain in the mouth! lol
So, ended up as a Witch. The lace on my hat is over 90 years old. It was my Nana’s. There is also a black rose with it. This is my favorite Witch hat. Yes, I have more than one. 😛
My fabulous make-up was done by Steph. She made me look damn good for a 51 year old. lol
Even with the pain, I had so much fun! I have let fear, being self-conscious, and embarrassment from my illness stop me from doing so many things. I know there will be times when my condition will keep from doing certain things. It makes me sad to not be able to be ‘normal’. One thing is for sure; I am blessed with a support team that always has my back. They never give up on me, even when I give up on myself. I am one of the lucky ones!
A Happy Halloween to all!
Love and Light!
Pumpkin contest anyone?
The past few years I haven’t done the Halloween thing. Bums me out as Halloween is a favorite day for me. I used to always dress up and hand out candy. Scaring kids was and added plus for me. 😛
Tomorrow is going to be so exciting for me. My former nurse and now my BFF Don is having a pumpkin carving contest party at his home. I’M GOING TO DRESS UP!! It’s been so long since getting out my Halloween gear; dress, wigs, jewelry, makeup, etc. Steph and her crew are going, as well as my family. I can’t wait to meet Don’s friends and make some new friends in the process. It’s the little things in life that make so happy. I won’t be doing any carving myself, as knives and me don’t go together very well.
So, YAY for me!! I’m finally getting out and doing things again. Taking baby steps, or rolls. lol
Peace out!
Love and Light
Making it Through the Rain 