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.￼
We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross.￼￼￼ they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. ￼￼Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳￼￼
I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.
I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. ￼
It’s been two weeks and one day since my suicide attempt. I’m still on that high but I have had a couple of lows. My husband helped talk me through them and I’m utilizing my tribe. I have the suicide hotline phone number ready to go on my phone, and Alexa will call them for me as well. People think it’s easy to just, get over things. For some it is, but for some of us it’s not. All we can do is live day by day. I am actually living minute by minute right now. I have been known to self deprecate and that is something I’m trying to stop. I am an awesome person, a great mom and wife, and a fierce friend. I am very proud of myself right now for holding it together when I’m ready to fall apart. I am really hoping for better days. I am hoping to get out of this bed at some point. I just have to let go of my past and who I was and learn to love the person I’m becoming. It’s a process and a pretty hard road, but I’m going to keep going forward.￼
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.
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.
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 acutecarerehab I will never get out of this bed. So really, I’m already dead or I have truly lost my mind. You choose…￼￼
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…
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!