medical · Ramblings · RANDOM

The joys of a urostomy

I love the beach! I grew up going to Santa Monica Beach all the time and I just love all beaches. I love the water, Pisces here, and I love or at least used to love feeling the sand beneath my feet. I don’t love the beach however when it’s all inside my bladder. 😮 Nope… DON’T like it one bit. This issue happened two years ago and it looks like it’s going to have to be taken care of every couple of years from now on. 😭 You see, when they built my stoma for my urostomy they used part of the bowel. Can you say infection much!? I guess I didn’t really understand the whole process until after the fact. In all honesty there wasn’t much I could’ve done anyway because it had to be done. Thank you multiple sclerosis you fucking piece of shit disease. I’m sorry off-base a little, so now my bladder looks like you’re underwater on a rocky shoreline. it also looks like, I think, a dinosaurs 🦖 lair where they keep their eggs. 😅

And… it looks like there’s an alien and a set of twins hanging out in my bladder! I think I should ask for rent or something. 😂

On August 7 I will be going in and they will be inserting in a much larger tube into my bladder to hopefully clean out all my little stones. I’m a little bummed because I was hoping I could keep them and make a necklace or something out of them. I know, I know, gross. 😜 I have to find the humor in all things or I really wouldn’t want to be here anymore…

So that’s what’s been going on with me. Not much change in the paint department and I’m still pretty much trapped in my bed. But I am working on it and I hope to remember to blog a little more because I miss it. 🖤

Have courage and be kind…

multiple sclerosis · ppms · 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! 🖤

crazy

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

fight

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