Craziness

What a feeling!

 That feeling of comfort… That feeling of no pain…

It’s been so long. But I found a spot, even if only for a moment, there was no pain.  It could be the adjustable bed, it could be the medicinal meds. ✌️  Whatever it is, it is AH-mazing!!!  I can’t lay on my side or move that much, so for the last four years I’ve literally been on my back. (minds out of the gutter) and now as I am  talking this blog in to my phone, I’m starting to feel a little bit of pain. It’s mainly the butt bone!! 🤪 If my butt had a voice it would probably tell me to get the fuck off of it!

 So I’m watching ‘Grace and Frankie’, season four. It’s freaking funny as shit!  And yes that is how my mind works, it flies from one thing to another. I can’t keep up with it most days. That’s probably why I do not sleep easily. My mind goes from 0 to 60 in about a fraction of a second.

 So, hey, I just adjusted my bed and now the pain is gone again… Hooray!  And now I have one dog sleeping between my legs under the covers and my adorable little pit mix, who is as sweet as the day is long, lying next to me.

^^^ And this is what happens when I am bored, unsupervised, and highly medicated.  Snapchat pictures with filters. Does it get more boring than that??!! You have to admit they are fun and they make you look adorable. So why the fuck not.

Peace ✌️

 

 

 

 

Craziness · Multiple Sclerosis · Music · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Silly

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…

paint

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!

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

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…

madhere

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

Happiness · Holiday · RANDOM

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. 😛

Mwahahaha
Mwahahaha
Witchy Woman
Witchy Woman
I WILL bite you...
I WILL bite you…

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

Wish I cold do this! Spooky
Wish I cold do this! Spooky
Medical · Ramblings · RANDOM

Baahahaha – Leg Brace Update

Just call me Grandma!! bahahaha

grannybrace

NOT MY LEG!! Wrong gender. lol Just say no to Jr. High tube socks!! lmao

So the orthopedics office called and said these braces will be better for me to start with, due to the tightness of my tendons. These will help to stretch them out easier. I CAN work these bitches. First NO tube socks, no man legs, cute different colored laces, some fun cute socks, and my hot skinny calves! Maybe even some Swarovski crystals all over. Yeah baby!!

Again, I got this!!

Anger · Fear · Ramblings

What living with MS feels like…

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!!

Fear · Ramblings

MS and Me…

Here’s my MS in a nutshell; cannot walk, cannot sit up on my own, cannot get out of bed without using a Hoyer lift, daily pain, double stoma girl (colostomy, urostomy), numbness, fatigue, migraines, shakes, occasional bedsores, unable to shower alone, degenerative disc, obviously bed-ridden and wheel-chariot bound, drop foot, stiffness, pain, did I say PAIN, living in a prison that IS my body, no independence, unable to drive anymore, insomnia (severe), primary progressive MS (aggressive), hot and cold issues, memory issues, brain fog, kaleidescope eyes, dizziness, depression, anxiety, and the list goes on!

I fight every day, and the fight is exhausting.

I won’t stop fighting.

Hope is paralyizing. I won’t stop hoping.

I want to give up daily. I won’t give up.

95b79e44821977e43c74ea2e8bd726dd

I will be strong!