anger · broken · Darkness · Depression · Fear · FUCK · FUNNY · health · healthcare · HELL · hope · joy · lonliness · love · mindless-thoughts · multiple sclerosis · nightmares · Pain · primary progressive MS · Ramblings · RANDOM

Broken

So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL

Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳


We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜

I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL

Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊

I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!

Angels-Among-Us · boredom · dreams · FUNNY · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · sleep · strength

You are getting sleepy… sleepy

Sleep in one of the many wonders of the universe. Something that is not always easy for me. I think because my body is always at rest my brain is not sure when it should sleep or not sleep. 😴There have been times where I am up for 3 to 4 days without any sleep until I finally pass out from exhaustion. 😳 Thankfully that hasn’t happened in quite some time because I found a few things that really help me. I thought I would share and maybe it might help someone else.

For a while I would watch Dr. PimplePopper videos because they would knock me out. I don’t know why but her videos can be mesmerizing. LOL I know gross! But, If you know me you know I like gross. 😂

Then I started using an app called ‘Insight Timer’, which I recommend highly. I like to listen to one of the recordings that is called, Floating. It’s very calming. I found one last night that is called ‘Sacral Chakra Tibetan Singing Bowl. It was quite beautiful and I love the sound of the singing bowls. I have tried guided meditation, but like with books on tape, the voices to me were not soothing or calming. The only time I have ever been able to do guided meditation was when I was able to do yoga for MS many years ago. The yoga instructor, Colleen, had the most beautiful accent and when we would finish with yoga she would do a guided meditation with us. I always fell asleep instantly. Her voice is like an angel’s. 😇

Then a friend of mine, Victoria, sent me a link to some really cool videos called ASMR on YouTube. Autonomous sensory Meridian response (ASMR) – a feeling of well-being combined with a tingling sensation in the scalp and down the back of the neck, as experienced by some people in response to a specific gentle stimulus, often a particular sound.

I was honestly very skeptical about this. When I first started watching I have to admit I was kind of giggling a lot. What are these people doing? 😜They were clicking their tongues, tapping on various items, whispering, and doing off-the-wall role-play. But, lo and behold, the next thing I knew I was fast asleep. ‘Whispers Red’ and ‘Sophie Michelle’ are my favorites. I tried listening and watching a couple of the male ASMR videos, but their voices were not very calming to me. Sorry, not sorry! LOL

Do a search in YouTube for ASMR videos for sleep. You will find a lot.

You do have to look around because some people don’t realize we just want to have a calming video.  There is one person that does it and she’s constantly talking about how people are stealing her ideas. Seriously! Everyone pretty much does the same thing. I tried to watch hers, but it was a no go. LOL I honestly don’t want to hear about someone else’s troubles 😮 so not one of my favorites. 😊

Another thing I have tried was books on tape. The only problem with that is you can’t choose the voice. LOL I just did not like the voice of the ones I heard. I have to have a soothing voice whether it be male or female and I have yet to find one. Although, if Morgan Freeman would do every book on tape that I want, I’d be OK with it. 🖤

I hope that something I have a mentioned in this post can help someone else, because then my sleepless nights and finding things that work… are worth it. 🖤

Have courage and be kind!

 

Celebration · Christmas · family · fun · FUNNY · Happiness · joy · love · multiple sclerosis · music · primary progressive MS · strength · stupid_stuff · Wheelchair

Holy Christmas balls Batman!

I had a great weekend! My step mom, who is more like a mother to me, and her husband came down on Saturday for our family Christmas. It was wonderful! I spent the first part of Saturday in my bed so we all camped out in my room and then when we were ready to eat, Roger got me up in my wheelchair and we actually ate our Christmas dinner at the table! You have no idea but that is a big deal. LOL The only issue was the fact that my Wheel-Chariot, even at its lowest position is still a bit high for the table. But thankfully I had my little tray so I got as close as I could to the table and used my tray for my food. She makes thee best mac & cheese ever and the best salad dressing. I was in heaven!  It felt very nice to feel normal, whatever that is, for that day. 🖤 Last year my daughter hung a string of lights around the walls of my bedroom and they brought me a beautiful lighted Christmas wreath. My room looks so pretty at night now! Festive and fun.

I also got an amazing “train case“ for my make up. I subscribe to Boxy Charm, so I get a surprise box every month of make up  and other fun things. It may seem frivolous or even stupid for me to do this because of the fact that I’m stuck in my bed, but for me it’s just fun and gives me something to do other than watching television. Although, the television is still on in the background. LOL Basically, it keeps me off the streets! 😂🤣

I hope this Monday finds everyone well. ♥️

Have courage and be kind!

Christmas · Depression · Fear · FUCK · FUNNY · Holiday · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · silly

All I hear is blah blah blah… I’m a dirty tramp

I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds

My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks!  I’m always waiting for that other proverbial  shoe to drop.  I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔

Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother.  But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.

That is all for now… I know you’re happy about that. Remember, have courage and be kind!

Circa: a long time ago in a far off land…
Darkness · Depression · falling · Fear · FUCK · FUNNY · health · HELL · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · strength

It’s not just MS!!

If anyone ever tells you, be glad it’s just MS!!  Punch them square in the jaw, to hopefully have the end result be that teeth fall out. Then they will remember never to say that to anyone ever again.

I’m really trying to stay positive, but when every day is the same with change nowhere in sight, it can be hard.

I’ll get over this feeling in a little while and I will get back to my positive outlook. But today I’m allowed to  feel this way and be angry.

And no, I’m not glad it was just multiple sclerosis. So next time think before you fucking speak. This is not going out to any one person in general, it’s just something I see all over the Internet when people are ignorant. So now I am going to watch Fast Times at Ridgemont high, laugh at how stupid it is and funny, and find my positive place again.

Have courage and be kind!

 

Animals · boredom · confession · Depression · FUNNY · health · health insurance · hope · medical · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · strength · stupid_stuff · Wheelchair

Some days…

Seriously, some days I wonder why the hell I even bother waking up. No, I don’t mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didn’t care anymore. I kept my self medicated so I didn’t have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left.  In a perfect world I would’ve been able to remain there until I could actually get up on my own. And no, I don’t mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair.  In this world, insurance would have none of that. 😳

So I’ve been lying here for the last two days, angry and a little bit lost. It seems that since I had a glimpse of what might happen, I am not handling being trapped very well anymore. Hell, without the help I need, nothing is going to change. I feel like I’m fooling myself in a sense when I say that I can do this on my own. I want to keep that positive facade going so everyone thinks everything’s great… but it’s not. And no, I’m not giving up, but I am looking for alternatives. 🤔

I’ve been mindlessly watching movies for the last two days. Anything to keep my mind off of everything that I cannot do anymore. As I’m watching I constantly wiggle my butt 😏 move my arms 💪🏻 and try and strengthen myself. But in all honesty, that’s not going to change very much for me.  Right now while I’m talk typing, I’m wiggling my hips back-and-forth. Just keep moving is my new motto, and moving is what I will keep doing as much as I can. If only my dogs 🐶 had opposable thumbs and could understand me and be able to talk  and be strong enough to lift me up, everything would be aces. 😂  It could happen.

Okay, back to the real world. I think the worst part for me is that in my mind I can see myself moving my legs enough to be able to get transferred to my wheelchair. I can’t explain it properly. Sometimes as I’m lying here I can almost feel my body move on its own. I know that sounds like some crazy  psychotic shit. LOL  I wish I had the proper words for it. But I am literally drawing a blank. It’s like I can see myself outside of myself. Okay, now I’m  really going in to the realms of crazy psycho woman. 🤣  And I think I just said back to the real world. Welcome to my mind. 😳

I am now going to bid you farewell for the night.  You can thank me later. 💋

Have courage and be kind 🖤

 

anger · confession · Darkness · Depression · family · Fear · FUCK · FUNNY · Happiness · health · health insurance · healthcare · hope · medical · medications · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · strength · Wheelchair

Being Defeated is NOT an Option!

Yesterday was not one of my better days. I had in-home physical therapy in the morning and then my appointment with Dr. Nasser in the afternoon. I was feeling okay in the morning and after physical therapy. All of a sudden it felt like a Mack truck had run over me. I just started feeling queasy and was having a hard time sitting up. At around 1 PM we started getting me ready for my appointment. I am unable to dress myself so I need to be rolled and moved a lot. The pain was unimaginable. By the time I was dressed, leg braces on, and Hoyer lifted in to my power chair, I was done! I could’ve canceled my appointment, but I knew I needed to go. He deals with my pain management, so I needed to go badly. The drive was excruciating. When we got there it was 83°, and heat is not my friend. The combination of everything started to bring about a little bit of depression. I was angry. I’ve been trying so hard to get better and to feel better… then this hits me. I felt like I was being punished for getting dressed. LOL I know that sounds crazy, but that’s how I was feeling.

Bottom line, I was feeling defeated, I’m not gonna lie!

By the time I got into his office I felt like I was going to be sick. Then I realized that my Hydro flask had leaked water all inside of my purse. It looked like I peed myself. Which, I’ve done before, but this time it wasn’t me. LOL Roger took my purse outside and dumped all the water out. He left to go upstairs this doctors appointment and I went into the room for my doctors appointment. The room was so small and it was so hot in there I thought I was going to pass out. Thankfully Roger’s  appointment finished before my doctor came in the room, so he came in with me. Sometimes I just need my hubby. Sometimes! 😉

My doctor finally came in the room, we exchanged pleasantries, and then took care of business. I got my medications refilled and hopefully four more physical therapy appointments. I explained I was a little perturbed that someone had dropped the ball because it took three weeks before I even got physical therapy started after I left the rehab. But, I have to let that kind of shit go because all it does is upset me. Those of us that deal with chronic illness and doctors know that many times we are not the priority. While my time in rehab was awesome, follow has not been the best. Luckily, I am a little bit of… okay a-lot-a-bit of a bitch, and when I set my mind something… nothing will stop me!

We wanted to go grocery shopping after our doctors appointments, but that wasn’t happening! By the time we got home my pain was so intense I just wanted to get into my bed and hide under the covers. And that is what I did! There were a lot of tears and, again a lot of feelings of defeat. I started second-guessing myself. All I could think was, if doing the little stuff that I did was going to knock me the fuck out like it did, then what’s the point? Is it ever going to be easier? Do I want to keep putting myself through the horrific pain every time I move? The answers are: I’m primary progressive and yes the little things probably will kick my ass, it’s probably not going to get easier, and I do have to put myself through the pain if I want to get better.

I may be down right now, but I will never be out.

Have Courage and Be Kind

** again, I’m sorry for bad grammar, typos, run on sentences. I’m a business major not an English major. LOL PEACE!