Fear · Health · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Straightening my crown yet again…

So we’re going to try getting me up in my shower chair. I figure since Independence Blue Cross isn’t going to help me in any way, I’m going to have to do it my damn self. Since the husband has to stay at home right now, I guess it’s the best time to start trying. I won’t lie, I am really scared because I know it’s gonna hurt like a motherfucker. So I’m going to “medicate” 🌿and try to psych myself up for this. It just really sucks that I have to psych myself up to take a shower. I know that some of you reading this completely understand, and I’m so sorry.

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I hope that all the movement I’ve been doing on my own will help. I just have to remind myself not to get discouraged if it doesn’t work today. If I keep trying maybe at some point it will work. The worst part about that comment is I’ve been trying on my own for quite some time now and it hasn’t worked. But, maybe, one of these times it will. Oh my gosh I am really nervous about this.

Also, real quick, thank you to all that have stuck by me and supported me even when I go a little mad. 😉 Seriously, thank you 🙏🏻🖤

Have courage and be kind.

Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings

MS Awareness Month day 23

If any doctor tells you that multiple sclerosis does not cause pain, junk punch them to show them that it does. That doctor should not be practicing medicine if in fact he/she believes no pain is involved with MS. Most likely they got their degree at Acme school of medicine. Sorry but they are incompetent and ignorant and you should find another doctor if that happens to you. But please don’t forget to junk punch that idiot.

Have courage and be kind. Although in this case you don’t have to be kind. 😏

FUCK · Health · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sarcasm · Strength

Be the bad ass you were meant to be!

I’m telling you today is already on my nerves. I got my bladder surgery scheduled and the pre-surgery doctors appointment. I did what I was told and called to get the pre-certification for the non-emergent transport, and was told my doctor needs to call. Now a week and a half ago the Young lady at Accolade called with me on the phone and took care of this for me. I think something must have happened because today no one will help me do it. Then, this weekend I received a new bill from my August 2019 stay and while getting my papers all together I found one I’d forgotten about. Previously I was told that my responsibility would be $50.90, but these bills together are $3000 and some change. I think someone’s messing with me. Am I on candid camera? Or maybe the TV show Punked came back. I know the wizard is behind the curtain. 😂

Trust me this morning I haven’t been strong. I’ve been crying a lot because it’s so overwhelming right now. This company (Independence Blue Cross) and their people are keeping proper care from me and making everything I need that much harder. it’s been a big eye-opening experience for me. I used to think people were exaggerating when they said their health insurance wasn’t helping them etc. I mean how can your health insurance not help you when you pay for that service?! Right? It has been boldly thrown into my face that it’s all about the money and the greed of these corporations. They have the money to put me in a top-of-the-line acute neurological rehab, but they’re not going to do it because that would take away from their paychecks. I am tired, I am discouraged, I am broken, but I will not be defeated! If they’re doing this to me how many other people have they done this to? And how many of those people did not have the strength or even know what to do to get help. This is what these companies do. They prey on people like me and their rent-a-docs run our healthcare without even seeing us or meeting us. 

So, while I have had a mental breakdown this morning and am feeling myself falling into the depths of healthcare insurance hell, I will not stop! this is my life! And I really hate when my mind goes to that dark place and I pray for karma to hit each and every one of the people that are denying me the life-saving care. I don’t like being that person. I don’t want anyone to feel the depths of despair that I feel every morning I wake up and realize it’s another day trapped in this hell. I wish these people would come to my fucking home. All they would have to do is take one look at my legs and they would see how much I need their help. Oh shit, wait a minute… They DON’T FUCKING CARE! Phew… that was a close one, I almost gave them credit for being human.

I am adjusting my sails right now!! 🖤

Have courage and be kind.

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

Hope Hope Hope

Two years ago I had so much hope. I was in the rehab and I was getting stronger. For the next three weeks or so I’m gonna be seeing all of these posts. And every time it comes up in my Facebook memories it feels like a punch in the stomach. They kicked me out too soon and there was no follow up. We tried “at home” physical therapy, and it was a joke.

If I had had two more weeks I probably could’ve gotten to the point where I could transfer myself to my chair.

I really did have so much hope but sadly I’m finding that hope is paralyzing. Have courage and be kind…

*** there will be an update tomorrow night regarding my transport to and from my doctor. If it wasn’t happening to me I wouldn’t believe it. 😢

Anger · Fear · Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

My soul is tired but my will is strong…

Yesterday was an eye-opening experience for me being out of bed really for the first time since August 18, 2019. I am in so much pain today and sleep did not come easily last night. I now understand fully and completely that in-home therapy is not gonna help me at all. I need to be in a place where they re-train my body to move again and help me deal with the pain in my hips. It’s going to be a process and it has to be hard-core. I was up all night thinking about the night I fell on October 10, 2013 and how everything led up to where I am now. I need neurological physical therapy in a facility, NOT at home. I’m going to need the proper medications for the pain and I need to learn how to move again. When I say I’m like a newborn baby, I’m not being sarcastic. I know it’s hard to believe. 😊 I am now going to make an appointment with the neurologist so he gets on board with my pain management doctor about hard-core rehab. The ambulance service comes early Friday morning to take me to my pain management doctors appointment. I’m scared to death. I was only in my chair for a couple of hours and the edema was so bad yesterday it really freaked me out. I’ve never had it that bad. I know that I’m going to be in a lying down position, but that’s how my legs were yesterday I think it was more about the upper half of my body. I don’t even know how to explain it. What I have realized is if something doesn’t happen quickly I’m seriously screwed. I don’t think it’ll ever come back. I don’t think I’ll ever be able to move right again unless something happens now. They’re hoping that I am too ill and too tired to fight. We all know it’s about money not about anybody’s health or well-being. I am tired. I am fed up. I am so close to breaking. But unfortunately for them, that’s when my strength shows up! This IS life or death for me. That’s not an overstatement! If something doesn’t change quickly I will not be here much longer. My body is breaking more and more every minute I’m trapped in this bed. Somethings got to give!! I know I know this is really in your face. But I will never back down from this because it is my life! I’ll say that again, this is my life! so now it’s time to get all my ducks in their proverbial row, get to all my doctors appointments via stretcher, and bring it! I’m seriously tired just thinking about it. Please universe give me strength!

Wait till they get a load of me! 😈

Have courage and be kind.

Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Thursday Thoughts

Sadly people with chronic illness do this all the time. We do it because we know others don’t REALLY want to know how we REALLY feel. We know when you ask us, “How are you?“ That you don’t want us to get down to the nitty-gritty. The answer you want is the one we give, “I’m fine.”

Let’s face it that’s the easiest answer to give. I’ve literally watched peoples eyes glaze over when I do tell them how I REALLY feel. When that happens I usually just stop talking and ask them how they are. Trust me, they love to talk about how they are. And that’s OK. It’s human nature.

Have courage and be kind…

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.

I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.

Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.

Have courage and be kind