Fear · Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

You’ll get through this!

I have made it through a couple times where I didn’t think I was going to make it. I wish I could say that it’s going to be OK, but I don’t know. I’m trying really hard every day and hoping that something is going to give. I just can’t go another 6+ years in this bed. I’ve had to learn patience, which has never been one of my virtues. I really want to stay positive but I don’t see me getting the help that I need. I’ve been in this bed for over six years and my body has, well, died in a sense. It’s going to take a lot of time and a lot of hard work to make my legs go back to a normal position. Unfortunately, we don’t have the money or the good insurance to get the help I need. And in this moment in my life, unless you’re trapped the way I am trapped, I understand you’re not going to understand. I know, blah blah blah. I just needed to vent it out. I’m struggling, but I’ll get through this. I’ll get through this to wake up trapped again. But, I’ll do it because that’s what everyone wants. OK, that didn’t come out the way it was supposed to, but I think some of you understand.

My legs are jacked the fuck up. I can’t straighten my knees or bend my ankles properly. I’ve been stuck in this bed for so long as I sit up, in my adjustable bed, I get dizzy. My body has literally died being in this bed. Ten to twenty, and I’m being generous, physical therapy visits won’t do anything for me. I can’t sit up unless I have help or something is behind me. But like I’ve stated before, Independence Blue Cross took me out too soon from the rehab. I was sitting up on my own. But when you get kicked out of rehab and you get no good in-home physical therapy, it all goes away.

Yes I know it’s obvious I’m struggling. I just am not sure how to wrap my head around it all. I can’t see the light at the end of the tunnel anymore and that’s what scares me. But I’ll keep fighting and hopefully one day it will take me to where I need to be.

I’m sorry if it’s all over the place right now. But I can’t get my thoughts in order so, there it is.

Have courage and be kind.

Happiness · Medical · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

FaceTime visit with my doctor!

I just had my FaceTime with my neurologist. He is going to get with Dr. Nasser (pain management doctor) to discuss rehab options. I’m not going to worry about that right now because with everything going on coronavirus wise, it’s going to have to wait anyways. Once all this is said and done though, he and Dr. Nasser will most likely be going after my insurance company to give me the care that I need in order to save my life! 

I told him I want to reevaluate my fracture at L1 and he said we will definitely look into that. I think I’m gonna have to look into that on my own because it’s kind of everyone’s neglect that they didn’t notice it when I fell 6 years ago. 🙄 So I think that’s gonna be for me to figure out. LOL I also need to find an Osteo doctor because I also have a fracture at L4 that shouldn’t have happened. So I need to have my bones checked. That sounded a little kinky. LOL

We have a follow up in June. 👍 So now that that’s out-of-the-way, both my main doctors, I will be looking for some good mental health clinics and/or physicians.  I have called a couple but of course none of them take my insurance. 😡 I’m not giving up because I know I really need to be able to talk to someone.

I hope every person reading this is having their best day possible.

Have courage and be kind.

Happiness · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings

Mommy pay attention to me!

My appointment with my pain management doctor went well yesterday. We are looking into at home rehab, when the world isn’t so crazy. I decided that I will talk about a baclofen pump. I really did not want anything else embedded into my body, but if it helps me get through my leg spasticity and helps with pain, I’ll do it. I was just concerned because I already have a PowerPort, my colostomy, and of course my urostomy, on my and in my person. I have to do what helps. We are going to work very hard on getting my legs used to sitting in my wheelchair. The swelling is awful when I sit for too long. I am finding that as long as I have my Forrest Gump shoes on it is not as bad. I will have to invest in some good compression socks. With my husband home for a while, thanks to COVID-19, we’ve been trying to move my legs more and more every day. It will be a process because I have been stuck in this bed for six years.

I have my neurologist appointment today at 1:45 PM. That was very cool of them to get me in right away since yesterday they had to cancel. Thankfully their computers are back up and working! I have my list of questions that will be open and ready when the call comes through. Wish me luck! 

I contacted JS at Independence Blue Cross today regarding my transport to and from my doctors as I received another explanation of benefits saying it was denied etc. It seems he is taking care of this and I will wait before sending my appeal in. if you’re reading this JS, thank you! 

This is my baby girl who never leaves my side. She is wondering why I’m not paying any attention to her today. But I’ve had some things to do this morning. 😁 I know that once she gets her c-o-o-k-i-e she will be very happy. I have to spell it out or she would’ve known exactly what I was saying. 

Now I have some time to surf around the Internet before my appointment. I can’t believe I have gotten everything done before noon. I even ate breakfast and had my coffee. I did have a little bit of a low last night. A big shout out to my husband for talking me down. I love you more than my luggage! I hope everyone is having their best day possible. If not remember it’s just a bad day, not a bad life.

Have courage and be kind.

Health · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

To the people that I cherish so much

I feel I owe explanation of what’s going on with me. In August when I was denied rehab my heart broke and my mind fractured. When I got the explanation of benefits for the ambulance ride that was denied I felt completely betrayed. Jason Sweeney the executive at Independence Blue Cross, gave me those names of those companies to take me. Then after I was taken to my doctors he explained they don’t cover that Service. I have a very hard time dealing with incompetence and stupidity. And now I’m having a very hard time continuing to live the way I do.

I no longer want to exist. Let me explain when I mean by that, I can no longer live trapped in this bed for another six years, another 20 years. The pain I suffer on a daily basis is enough to make me want to leave this earth. I came very close two days ago to leaving. Moving my toes hurts, raising my arms hurts. It’s as if there is no end in sight. As of right now I can barely even move my arms. Thank the universe for talk text. I think that’s when it all came to a head.

Now I will backtrack a little bit to maybe help explain more of what’s happened to me in the last two years.

In February 2018 I came to the conclusion that I did not want to live. In that instance I called an ambulance and said I needed help. To make a long story short they got me help. They got me in the acute rehabilitation center at Palmdale regional. For one month I was there and I was getting better. But Independence Blue Cross decided they didn’t need to be there anymore so they kicked me to the curb. A couple times in-home therapy came but unfortunately he rarely showed up and when he did, he did nothing.

August 2019 we were trying to transfer me for a shower we got me in my Hoyer lift and the pain was so bad I thought I had broken another bone in my back since I already have two fractures. Thankfully there were no breaks but while I was at Palmdale regional Medical Center we tried getting me back into rehab there. Independence Blue Cross denied the request even though a previous they approved it.

So this doesn’t go on till the end of time, here and here are more of the backstory of trying to get into Palmdale regional medical center.

I will be sending this along with my denial letters (with highlighted comments and lies from Independence Blue Cross) and other correspondence to anyone who will listen. LA Times, NBC, CBS, ABC, Oprah, Montel Williams, Ellen, anyone that would like a good story on how insurance companies knowingly and willinglywillingly kill The people that rely on their care. I will also be doing research on how many people have perished because of Independence Blue Cross.

But again, I will not live another six years in this bed. Understand that as you will, but I am not living already. I’ve been dead inside for six years.

Have courage and be kind.

Fear · FUCK · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

The MonSter under my bed is real.

My MonSter is relentless and won’t let me go. I have no way to fight it anymore. There is nowhere to run when it’s your own mind and broken body that scares you. I truly am drowning and there’s no water in sight. I am fucking lost.

I tell people all the time I think I’m going to little crazy. Most people laugh a little because they think I’m kidding. Do you have any fucking idea how it feels to have been lying in the same position for over six years? You have no idea where my mind goes. I’ve had people tell me that I am lucky I still have my mind, my breath. Yeah it’s great having your mind when your body is dead. It’s wonderful to lie here 24/7 – 365 days a year when you have nothing to do but think. I actually had someone tell me that it (being in bed for that long) wouldn’t be possible. They actually made a comment about, “sure how do you go to the bathroom?” Well genius it’s only all over my blog and on my Facebook that I have holes in my stomach for that purpose. The surgery that almost killed me. But if you wanna know how I went to the bathroom before I got the stomas, sure ask me again I’ll give you all of the gory details. Fuck I’m so angry right now. So fucking angry!

The worst part is, my nightmare is never going to end. How many more times can I explain how Independence Blue Cross has killed me? I’m realizing it just doesn’t matter. Trust me, I know that no one wants to hear it about anymore. Fuck, I don’t wanna deal with it anymore.  I am sick to fucking death of all of it! and frankly, the way the US is, I’ll never get help. I’m realizing with everything that’s going on in our world right now that human lives are disposable. It’s money that counts the most. No one is going to have the rehab that I need to have because it costs too much money. My body is slowly curling up onto itself and I have no way to stop it. Without rehab there is no life for me.  without acute care rehab I will never get out of this bed. So really, I’m already dead or I have truly lost my mind. You choose…

Have courage and be kind…

Anger · Craziness · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

My doctor transport saga continues…

So… the only way I can get to my doctors is by gurney transport. I got the name of the people I used from the representative at Independence Blue Cross. I sent him the receipts explaining that it should be done at in-network rate blah blah blah. I received my explanation of benefits and it looks like procedure codes are missing etc. Seriously! 🤦🏻‍♀️ according to this they’ll only pay $100?! I don’t think so! I got the names of this service from the person that works in the executive offices at Independence Blue Cross. Then after I took these trips I was told that they don’t even cover these trips at all. WTF!! 😳 I’m dying over here at the incompetence of the people that work at Independence Blue Cross!



Oh my gosh and I almost forgot… so during this time I guess they will allow me FaceTime/phone appointments with my doctors. Although we’re not actually sure yet until they call my insurance company. So, if you’ll allow this now, why the fuck can’t I do FaceTime/phone appointments with my doctors all the time! I have a need for this, I am bedridden! I am unable to get out of my bed because Independence Blue Cross took me out of rehab much too early and fucked my life. And as we know they’re denying me rehab and have been denying me rehab since August of last year. I’ll be finding out in the next few days if in fact they will approve or deny my FaceTime/phone appointment set for next week. Independence Blue Cross, you damn well better allow me these over the phone appointments now and for as long as I will need them! 

So I’m going to be calling all of my doctors and getting over the phone appointments right now. I will also be getting my doctors together to get rehab going again! And NO Independence Blue Cross, my rehab won’t be done in the nursing home it will be done where I need it to be done, in an acute rehab facility! Are you so daft that you don’t understand I’ve been bedridden for over six years I need real help, not 10 to 20 minutes every couple of days!  Your doctors that work and get paid for by your company are incompetent buffoons if they don’t understand this. Money over human life! You’re all disgusting!

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.