Craziness · FUCK · Health · HELL · Primary Progressive MS · Quotes · Ramblings · Strength

It’s the boredom that kills you

As I am lying here trying to find something on TV, everything just hit me at once. My emotions went all over the place. Silently screaming and crying so no one in my house hears me. How long can one lie in the same spot every day? How many books can one person read? How much TV can one person watch? After a while each thing you do becomes boring. You lie the same way at all times as you can no longer roll your body to either side. I’ve actually had people tell me how lucky I am to be able to just lie around all day and have no big responsibilities. Really? 🤔 Maybe for one day or possibly even a week, but 6 years 3 months and counting… You must be fucking ridiculous! Mental torture is 100% accurate! When people tell me they can’t imagine, they have no idea what they would do, they could never cope, etc. They are 100% correct. They can’t imagine the darkness that goes through my mind every day. They have no idea how many nights I pray to whatever entity is out there to take me home. They couldn’t cope with realizing that death would be a beautiful freedom.

Sometimes I wonder which is more crazy, the thoughts that go through my mind or the fact that I stick around for them. My favorite ‘people’ are those that say, “No you’re not going crazy you’re just upset with your situation.” Oh how lovely that would be if it were that simple. I would love just to be ‘upset’ with my situation. That would be much easier to take. 

Have courage and be kind.

*** just a little FYI, I’m just venting and I hate having to add that but some people, the people that don’t know me, take some things I write in the wrong way. 🙄 If I didn’t get my feelings out, then I’d be worried. Thanks everyone… 



Anger · Craziness · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Trapped Inside

This GIF popped up on Facebook and when I saw it I felt empty. I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months. It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked noodles. They did no x-rays at the hospital that I can remember, they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.

This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore.

Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻‍♀️ I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific.  and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬  Because of this, my legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. Bahahaha They either cannot read or they just don’t care. I’m going with the latter. People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about. And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. 

I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t. If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about. You may share my illness but you don’t share what’s happening to me.

What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes. AND I am NOT being pessimistic, I’m being realistic!  I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am! Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.

So are you loving my new unapologetically me yet?

As always, have courage and be kind!

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! 

Health · Multiple Sclerosis · Ramblings

It’s OK to tell your truth

The more I think about what this picture says, the more it’s true. Everyone tells me that you’re so strong you’ll get through this, blah blah blah. What if I’m not that strong. This disease has broken me. And please I don’t want to hear you’ve got to find the positives… I do, I find the positives every day but I can still be broken. And that’s not something to be ashamed of. I’m 55 years old and I am unable to roll over in my bed on my own. I mean really, let that sink in. I’m like a newborn baby. So while I am strong, I’m not made of stone. 

I do feel defeated. And again that doesn’t make me weak! I deal with some things that would break other people. So I get kind of upset when people act like I’m being depressing or I’m acting sad. Yes there are days when it happens. And if that bothers anyone, you know exactly what you can do. 

Last night for the first time in 10 months I had to take a Xanax. I was so ashamed and disappointed in myself. And then I realized that sometimes we have to do what we have to and the medications are there for a reason. And thanks to a wonderful friend of mine, I don’t feel bad about it. When I started trying to pull my hair out I knew it was time. I could feel every lump in my bed. I had to rip my shirt off of me because I felt like I was being strangled. And you have no idea how hard it was. I cannot dress myself, yes read that again I cannot dress myself. So getting my shirt off was a literal fight to the death. Tracy – 1,  T-shirt – 0!!

When I say I am bedridden, I mean that in every sense of the word. I cannot just get up and get into my wheelchair. I need a person and a Hoyer lift. I cannot scratch my foot if it itches. I cannot cross my legs, I can’t move even 5 inches one way or the other on my bed because I cannot move my body by myself. My legs can not hold my body at all if I were to try I would fall directly to the floor. When I start to slide down my bed I can’t pull myself up, my son has to help me with that. What I wouldn’t give to be able to transfer and get in my chair on my own. I would never be in this bed that was a possibility.

When people say, I have MS but it doesn’t have me… I’m sorry but bullshit. The way I feel is, I have MS, and it has me, but I will never give up or give in until my last breath.

I’ve been in a really weird place since my fight with my own body last night. I’m not losing hope, but it something that I’m going to have to think about deal with and move on from. I know it will happen again because it’s not the first time it’s happened. OK I’ll be completely honest, it happens every fucking night but usually cannabis takes care of it.

Please I don’t want the, I’m sorry Tracys or anything like that. I’m just trying to show that MS is not just some little disease. It’s not, just MS.

I really want to spit nails when I see people getting angry because someone tells them they don’t look sick. Trust me be very glad they say that. Because I look sick and it’s obvious that there is something wrong now. Back in the day when someone would tell me that I didn’t look sick, I would look at them and say, you’re right I kick ass because I’m an MS warrior!!  So stop getting mad and let them know what a badass you are!

I’m just tired… October will be six years I’ve been trapped in this bed. I’m really trying to not let that happen, but I have become a realist and while I’m trying and working really hard to get out of this bed, it’s probably gonna take a little longer than that.  And quite frankly, I truly believe I’m going a little mad. I am in prison. The prison, that is my own body and my bedrooms four walls.

And this month on August 19 is the 22nd anniversary of my diagnosis. Oh joy…

As always, have courage and be kind!

 

Ramblings

Completely and utterly unsure

I’m not sure I like the person I was before I got sick anyways. I don’t think I’ve ever really liked myself. I just hope part of me can still be found. I see all of the motivational quotes and things where they talk about being brave not bitter blah blah blah  I guarantee you the people who make up those quotes are not chronically ill. 😂 Just like the people who say money can’t buy you happiness probably have money.  I don’t even know why am blogging right this minute. I saw the quote in the image that I posted and ended up here.

And now trailing off to something completely different, I think there’s a fracture in my right hip. The more I try to move the more things that break. So really you tell me what the point is…

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