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.￼￼￼
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.￼￼￼￼
Have courage and be kind.
￼This must’ve been written for me…
I’ve been dead inside for years. ￼
I realized today waking up at 12:30 PM that there’s no real reason for me to wake up. I do nothing all day but watch TV, play games on my phone, and watch people living their lives on￼ on social media sites… and I continue to lie in this bed. Six long years going on seven. ￼Is that really living?
￼Have courage and be kind…￼
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…￼￼￼￼
I’m dying inside
Have courage and be kind.￼
My favorite quote was once:
When do we finally say enough?
I’ve been trying for six years to get out of this bed. I thought I had a chance in 2018 and as you’ve heard, Independence Blue Cross took that away from me. I have to let go of hope because it has broken me. It has, paralyzed me. ￼I was taken right up to the edge of hope and slowly watched it all fade away time and time again. How much longer do I lie in this bed? How many more nights do I cry because of the pain in my legs? It’s a torment I can’t break away from. It’s a nightmare that I can’￼t awaken from. I just really want to get off this ride because I don’t really like it anymore.￼￼
Then I see these quotes ^^ and think, I get it but for some of us our present situation is our whole life. There is no best yet to come without help, and I can’t get that help.￼￼￼ I get it, I have breath, but breath is not life. It’s an existence that I’m tired of living.￼￼ I am a literal, head in a bed. I’m tired, I’m tired, I’m so so very tired…
Have courage and be kind.￼￼￼
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.￼
With everything going on right now I think they feel like I might’ve forgotten all about them… ￼But nope!! If anything I’m thinking about it more. I’m still waiting to find out if they’re going to pay for the medical transport that they told me I was covered for. But wait a minute, then they told me I’m not covered for it. 🤔 I just hope they understand that they better get my money back to me￼ at the “In”network rate. I’m still waiting for my check. The last I was told is he was going to check into it for me on march 20th. Now all I’m getting are crickets. I get it you’re probably denying a bunch of people for coronavirus testing and respiratory help. Seriously, you know you are! Just get on it, and￼￼ ￼give me back my fucking money! And be prepared, because at some point you will be giving me my rehab! I have not forgotten. 😏
Sharing this picture again so that more people start to really understand what’s happening in our country with our healthcare system.
Please everyone, stay indoors and be safe! 🖤
Have courage and be kind. ￼￼￼￼￼￼￼￼
Today is the last day of MS awareness month. Please keep doing your part to spread awareness. For those of us with the disease & our families, ￼it’s all year long.￼
#MSAwareness #MarchIsMSAwarenessMonth #MultipleSclerosis ￼￼
Have courage and be kind. ￼