Fear · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Sunday Feelings

When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻‍♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.

Have courage and be kind

*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.

Craziness · FUCK · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Stupid Stuff

The word FuCk…

I made this last night and posted on Facebook because that was the type of day/night I was having. Sometimes I will literally put my pillow over my face and scream at the top of my lungs. It really does help. 🤷🏻‍♀️

The word fuck has so many different meanings. It can be used for pleasure, anger, sarcasm, jokes. I will admit, it’s my favorite word. I’ve heard that people who are sarcastic and/or use profanity are more intelligent than those that don’t. I mean hey, I fully believe that. 😜 No, I really do believe it.

I’m pretty sure I did a blog about this sometime ago, but I’m too damn lazy to check. And I don’t care. LOL I feel if I wanna do the same blog post every fucking day, I can. 😂

I’ve been told to act my age, grow up, etc.… Fuck that. I’m 55, soon to be 56 in March, I can do what I fucking want. I tell people that I’m level 55 or 30 with 25 years experience. I mean, I’ve never been this age before, so I’m not really sure who I need to look to for age experience. My body feels like it’s 1 million years old, my mind is that of a teenager. I never want to lose that part of me. That’s the part of me that gets me through the nights that I don’t want to get through. 

I’m learning that I can no longer care what people think of me. I’ve done that my whole life and I haven’t been happy. I’ve been judged by so many people and when I look at the people who are doing it, glass houses… I’m done conforming to what people want me to be. Like I’ve said, I’m going to be unapologetically me. Those that do not like the new me, can fuck off. My real family my real friends will embrace this me. The other people don’t matter. I am still a work in progress regarding this. But I’ll get there.To anyone reading this, be unapologetically you as well. You’re the only one that lives your life! ♥️

Have courage and be kind! 

Fear · Primary Progressive MS · Ramblings · RANDOM · Sadness

Thoughts lost…

This quote is so true, and in its own way, scary. 

I said I was going to be unapologetically me etc. and tell my truths. A big truth and a very scary truth, is that in this moment I have no idea what or where I was going with this blog entry. The thought completely left my being. I just can’t find the words. 😪 Logically I know that it has something to do with this picture, But no matter how hard I try I cannot remember. So, I think I’m going to go and cry for a little bit…

Have courage and be kind!

Multiple Sclerosis · Ramblings · RANDOM

Multiple Sclerosis Fact – my itsy-bitsy spiders

I call this issue my spiders. It feels like thousands of teeny tiny little spiders are running all across my body. But alas, there is nothing there. Although, one night, I found an ant on my arm. 🤔😂

Unfortunately there’s not much you can do for it. It’s just another issue we learn to ‘deal with‘ 😢  And that is why we are WARRIORS!! 🖤💪

Have courage and be kind!

#MSWarrior #TheBedriddenLife #MarchIsMSAwarenessMonth #NeverGiveUp #PPMS

Ramblings

I’m the great pretender

Even when it’s not OK… It’s just easier. Either way I don’t like telling how I’m feeling because it’s just too depressing.

Right now not much is OK. We think that I may have a possible fracture in my right hip from when we were doing my leg exercises. Our doctor appointment with the pain management doctor was today and I couldn’t go because the moment I’m rolled over to get in my Hoyer lift the pain is just too much. So I was hoping that the pain management doctor would possibly help me by getting an ambulance to pick me up get me to the hospital for x-rays. I guess they don’t do that. He really wants me to get to the hospital but there’s no way he can help me do it. Unfortunately we cannot afford an ambulance bill because our insurance thinks they’re out of network. AMR charges about $2000 a trip for a 4 mile drive. Now eventually my insurance pays for it after I appeal it one or more times. I’m tired of having to do that every time so it’s just easier not to get the ambulance. Then if I go to emergency the  emergency room doctors are always out of network, so I have to fight the insurance company again. And usually for a two minute interaction with the doctor it’s anywhere from $1600-$2400. I am so fucking tired of having to fight every time.

So now I don’t know what I should do. I’ve been let down time and time again by these doctors out here say that want to help me and then just passing the buck or don’t go out of their way at all to help me. All my pain management doctor had to do was make a phone call but I guess that’s not his job.  Who knows maybe things are different now… the way our country is going right now everything is fucked up.

So now I am going to try and find an ambulance that takes my insurance because I know AMR does not.  But then I run into that catch 22 of having to deal with the out of network doctor at the emergency room. I just can’t fucking win. 😳

There was an article about another celebrity and her anxiety due to her multiple sclerosis. Now while I feel horribly bad for anyone being stuck with this disease celebrities will never know the real struggle. They will never know what it’s like to not have money for help. They will never know what it’s like having doctors drop the ball on them because they can afford the good doctors. So yes I feel very bad for anyone with this disease, but please if you’re a celebrity don’t act like you know the struggles and how hard it is. You have the luxury of being able to get help. I know I sound like an asshole and bitter, but if I were a celebrity I wouldn’t have these issues.

As always you lovely people… Have courage and be kind! 🖤

Ramblings

Fight over Fear

This popped up in my memories on FB and I really needed to see this today. I’m starting to not feel very strong and the last couple of nights I can not get comfortable at all. At night my legs become very heavy I guess that’s how to describe it and there’s moments when I can’t feel them and it scares me. I have become very anxious and ready to let go but then something happens and I make it through. I’m starting to really hate being trapped in his bed. It’s been five years and two months and I’m seriously fuck I’m not even sure anymore. 😂
I really do believe I’m going on a little mad. LOL oh well life goes on and so will I. 🖤😘

I think the hardest part is I know what needs to be done but we don’t have the resources to do it.  And when I said above that I’m going a little mad, there are times I really think I am. 😜 I’m having issues again with sleeping and falling asleep  because I really believe my body doesn’t know what it is supposed to be doing. It’s always at rest so how does it distinguish between when it should be asleep or awake. We are using pillows to slowly help keep my legs in more of a proper position but I don’t even know if it’s gonna work. They have been flopped to the side for so long trying to put them back in the position is  horrifically painful. The key here is baby steps.

I don’t want to sound like a downer but I just don’t know if I can do this for another five years. When I say I’m bedridden I don’t mean that I can transfer into my chair and get up and cruise around I mean I’m trapped in this bed. The only way to get out of this bed is with the  Hoyer lift. And being lifted up and that is so painful I think that’s what’s keeping me trapped in this bed. Just don’t know anymore. I’m scared, I’m angry, but at the same time I’m ready to kick some ass and fight. I just hope my fight stays stronger than my fear.

Have courage and be kind