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 · Primary Progressive MS · Quotes · Ramblings

This is my unapologetic truth and fuck you Independence Blue Cross

I’m trying really hard to find my way back from my depression. But right now my demons are circling around me and they’re not letting go. When Jason told me that I am not covered under my insurance to get to my doctors appointments, I think that was the straw that broke this camels back. First they deny me the only thing that will save me, Acute rehabilitation, and now they’re literally keeping me from my doctors. How do people that are bedridden afford to get to the doctors? I cannot pay $400 to $500 every time I need to see my doctor. The following picture is something that I never really wanted to share but these are my legs. I cannot bend my ankles so my feet are what I call, ballerina feet. I cannot straighten my knees. And as you can tell my legs flop to the sides and I cannot turn them so that they sit properly. This is what six years of being trapped does to you when you have doctors that don’t help you and insurance companies that keep you from getting the care you need.

Let me explain how painful it is when my legs decide to tense up. My feet get even straighter and my toes start to curl and there’s nothing I can do to stop it because I cannot sit up to grab my leg or to rub the area that’s hurt. Because I can’t sit up on my own. As I’m talk texting this it’s hard to see because I haven’t been able to stop crying since I was told by Jason basically, fuck you bitch. I mean basically we’re not gonna help you get your legs back in order. Without rehab nothing is ever going to change for me. I’ve had people ask me how come I didn’t realize this was happening to me. I’m not a fucking doctor dickhead. It wasn’t just one thing that led to this. The following pictures happened soon after I became bedridden. The surgeries for my colostomy and urostomy fucked up. I’m still pissed off that they saved me because I was really hoping they just would’ve let me die when it went bad.



I had the surgery June 10, 2014. it took about four days I guess for a nurse to realize something was wrong so they opened me back up and I had to have a wound VAC to close the hole in my stomach. So for 11 months after the depression was completely and utterly consuming. Because of the problems they had with the colostomy they ended up giving me an ileostomy. That was probably the worst thing that could ever have been done to me. I told them that if they did not fix it when my first wound heals up, that I was leaving earth because there was no way I was going to live with an ileostomy. Now if I were able to move and do things I might not of felt so drastic about it but when you’re trapped and everyone else has to fix it for you, maybe you’d understand. 11 months after they redid the surgery, and it worked but that surgery also needed a smaller wound VAC and the depression again was fucking terrible! So let’s recap… I fell on October 10, 2013 (became bedridden) the following year June 2014, I had the surgery which I wish had killed me, then in 2015 I had the surgery to fix the fuck up. So for the next two years I thought I had to come to terms with having a colostomy and urostomy. Unless you’ve been there you have no fucking idea what it makes you feel like. I still to this day do not like to look at my stomach. You really have no idea how badly I wish I had died in that original surgery.  for the more graphic and full story you can check out my post here.

I know that some of this makes no sense at all because it still doesn’t make any sense to me. I now have no fucking idea how I’m supposed to get to my doctors. They canceled my bladder stone surgery until April 29. Of course I knew that was going to happen, but now I have no way to get to the pre-op appointments for the bloodwork, x-rays, urine samples, everything they need before surgery. I really believe that this is independence blue cross’ way of telling me fuck you bitch we don’t give a shit whether you live or die. Basically we’re not going to help you. We’re not gonna help you get the care you need, we’re not going to help you get to your doctors appointments, and even if you do get to your doctors appointments we’re not going to give you the care that your doctors want you to have. I know that was a huge run-on sentence, but I talk text so it’s as if you and I are sitting there talking with each other. 

I’m really trying to hold on here. I’m really trying to find my way back to the light, but my demons have their closet me right now and they are not letting up. Unfortunately for my demons they don’t realize that it’s when I’m pushed to my limit, when I am shoved headfirst into the ground, that I will rise again like a phoenix. It may take me a minute but I’ll get there and God or the universe or whatever you believe in, help anyone that has tried to keep me down. Because when I come back, I will come back with a vengeance.

 

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

MS Awareness Month Day 4

This is a big one for us. MS Fatigue is not just being ‘tired’. It’s as if your soul has been sucked out of you and you just cannot wake up. unfortunately while we are all different in our MS journeys, this one is pretty common to us all. #MSAwareness #MSawarenessMonth

Check out Positive Living With MS. It’s a wonderful site.

Have courage and 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. 😢