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…￼
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.￼
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￼.￼￼￼
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.￼
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.￼
The following is from a Facebook post I wrote exactly 2 years ago today when I was at the rehab Institute at Palmdale regional Medical Center. If Independence Blue Cross had not forced me out after one month I would not be fighting to get the proper care that I need! I found out that if they had asked to put me in a nursing home for rehabilitation they probably would’ve covered it. A nursing home!!! Are they fucking serious! You get maybe 20 to 40 minutes of rehab. In the acute rehab you get 3 to 4 hours. I am so angry because Independence Blue Cross took my life from me when they made me leave. Trust me I’m not naïve. I know it’s all about the money. Or possibly the lotto where they throw your name in a hat and decide who gets care this month. ￼They don’t want us to get well they want us to die. I know I’ve said this before, but how can anyone consciously deny someone life-saving care. I just smile and the fact that, Karma is a bitch and she doesn’t forget. ￼Okay… I got off track. 😜 Again the following is from my Facebook post from two years ago today:
￼￼￼￼I think I need to say something due to some private messages I am getting. What I’m doing is NOT a cure. There is NO cure for multiple sclerosis at this time. What I am doing is making me feel better mentally which is helping me physically. 💪🏻
I have primary progressive MS. Only 10% of people with MS have my type. I was diagnosed in August 1997 so I know what MS is and what it does to a person. I am not new to this. I was told from the beginning I would get worse it’s progressive and there was nothing I could do about it. So I listened to everyone and believed what everyone said. I basically gave up on me and the person I was and became MS. I feel the need to say it again, I know what MS is and how it affects people. I’m living it.
Some people say it’s hereditary. I’m the first in my family on both sides to have anything like this and I really hope it stops with me. I fully believe when you have MS you have had it your whole life. It just takes something dramatic or life-changing to bring it out. That’s my opinion only but that is how I feel about it.
I basically laid down and let it take me over. I know that my MS is progressive. I know it will always be with me until the cure is found. But I also know that by being in this program I am getting muscles back. I am moving again.
I cannot stress enough how bad I was before this. The last four years I literally never left my bed. The only time I would leave was to go to doctors appointments and that was rare. I was paralyzed from the waist down. My legs did not move for the last four years. When I went to the ER on January 16 my arms had stopped working as well. Only my right arm worked a little bit. On that night I made the choice to not end my life and to get help! It took me losing it in the ER at the doctor for them to finally listen to me. And the doctor did listen and he got me help and now I’m here!
As most of you have seen I am moving my arms now and I’m beginning to get back some of what I lost from my waist down and it’s only getting better. I am done listening to the doctors and to other people that it (physical therapy etc.) won’t change anything. This therapy I’m in IS changing everything! They know I have MS and they are working it around me. Last night I woke up and the MonSter that is MS tried to come through. I told it to get the fuck away from me, that this is my time now. This morning I worked through the feeling and I made it. 👍🏻
MS is different for all of us. But what I’m doing is helpful for all of us. It’s never a bad thing to keep moving. The old adage, move it or lose it, I learned the hard way that it is true.
So, again, I know this is not a cure. But what it’s doing for me mentally is completely amazing. I forgot what it was like to be positive. I have surrounded myself with negative for so long that I thought that’s how life was. It’s not!
If sharing my story helps even person, my journey (even the excruciating pain) will be completely worth it! 🧡
#MSWarrior #NeverGiveUpHave courage and be kind.￼
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. 😢￼￼
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.￼￼