I had my FaceTime neurologist appointment and PT yesterday. Both went well. But… I am paying for the PT today. 😳
I so hope this is true for me. We actually got my right leg into a 90° angle. That was crazy. My left side, not so much.￼ Today Roger (hubby) rolled blankets to keep my knees and legs a little more normal. It hurts quite a bit, but no pain no gain! ￼Thank the universe for cannabis. 😏
Stretching everything is going to be a painful process, but the outcome will be phenomenal! Now here is the shitty part… No more visits per Independence Blue Cross. 🙄 I have to call Monday and get the pain management doctor to call in more visits. WTF!!! My concern is all the work we have accomplished last week ￼will fade away waiting for Insurance to allow me more visits. I really don’t understand how they have the right to run my healthcare. It’s mind boggling.￼￼ The worst part is that it will start all over. What that means is, I will have to have an admission visit again, then an evaluation visit again, and then the PT visits start. What a fucking racket. All the while people like me are screwed. I just keep telling myself to keep breathing. This will work out, we will find a way.￼￼￼ Sadly this just proves to me why people do give up. We have to jump through so many hoops, it weakens our soul.
^^^ I say this, I just wish I could truly believe it.￼￼
Have courage and be kind. ￼
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.￼￼
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. ￼
Have courage and be kind.￼￼￼
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.￼￼￼￼
The dreaded “S” word. Weak, selfish, going to hell for eternal damnation… just some of the things you ‘hear’ when the word suicide comes up.￼￼ None of those things are true when we talk about suicide.￼ And we need to talk about it. A person who commits suicide is no more weak than you or I. A person who commits suicide is no more selfish than you or I.￼ As for going to hell for eternal damnation, well, if you believe that I feel very sorry for you.￼
There are two things I know about writing this blog. First is that I am not a writer. I was a Business Major, no English for me. ￼Well you know what I mean.￼ The second thing is that I’m afraid. I am afraid of what people may think of me. But I’m also empowered, and that’s what I’m feeling by writing￼ this blog.￼ The people who try to or do commit suicide are in the depths of despair. They are drowning in the abyss of whatever pain has brought to their life. They feel a burden to all those they love around them and they want to try and make it better for them. In their minds they believe that by not being there that their loved ones will be inevitably happier￼￼. And yes, they want to stop their endless pain, whatever that may be.￼ I am sure there are some reading this thinking, “What does she know about it, how can she make these statements.”￼ ￼ Well you see, on Mother’s Day, I tried committing suicide. And if I’m being completely honest, this wasn’t my first rodeo. So yes, it’s time we talk.￼￼
The total despair started￼ on Friday. I’m not sure where it came from I just felt so lost and so much of a burden to my family. So I overmedicated a little bit on Friday then a little more on Saturday and on Sunday well… Monday is completely lost to me. Tuesday the vomiting started. I wasn’t sure what was happening. You see I don’t remember much of what I did I just remember looking over at my medication and realizing that 2/3 of the bottle was gone.￼￼ there were over 120 pills in that bottle. So then I started piecing together what happened￼. The moment my daughter came in the room to comfort me as I was vomiting￼, was my literal wake up call.￼ I was mortified. Then I realized it was my husband and my 27th wedding anniversary on the 8th, that I had completely forgotten about. WTF!! ￼
To my family it was a normal weekend with mom basically sleeping. So they had no idea what was happening.￼ Back at the moment my daughter came in the room I realized it was time to talk. I told my husband what I thought was happening to me and that I needed help. I called my mom and told her what was going on. To my ￼￼￼complete surprise I had called her and told her I was going to do something. She had immediately called my husband and he checked on me but he had no idea about my medication. And because sleep is my only freedom my family doesn’t try and wake me up when I am sleeping. I’m pretty sure that will change now. 😊 ￼ I guess I told her that I was writing letters to my family. And again, to my complete surprise, there were some notes on my phone. I will fast forward a little bit to Wednesday at around 5 PM. After 🤮 for two days straight and not sleeping I knew it was time to go to the hospital and get some real help.￼￼￼￼ Help to stop vomiting and some mental health care help. So I made the call to 911 and went on my way to Antelope Valley Hospital.
Now here’s where the story gets, well I hate using the word but, crazy. ￼ I arrived at the hospital anywhere between 5 – 7 PM. Time was not something I was paying attention to.￼ ￼The ambulance was AMR. I’m mentioning this because that’s when more despair hit as I realized I will have to fight tooth and nail with my insurance company for this trip.￼ They do not offer ambulance service. The reason is because the companies won’t take the insurance because Independence Blue Cross does not pay, go figure. Now I’m at the hospital and a quick little story… I am on a bed in the hallway. There is a nurse using a rolling computer￼ with no gloves, no mask, touching her face leaning on her hands etc. I was waiting for Ashton Kutcher to pop out and tell me that I just got punked! ￼￼￼ Everyone and their mother, including myself, were wearing masks. I guess she thought she was special. 🤦🏻♀️￼￼
I finally get brought into the little intake room. The doctor came in and he was very pleasant. The nurse came in and she accessed my port and got anti-nausea medication started. I had a lovely little roommate at first. A 93-year-old mom of 5.￼ She was just the sweetest little thing. She made the first part of my stay bearable.￼ She was telling me her stories as I was vomiting into my bag. And as weird as that sounds, it was comforting and ￼￼I wasn’t as scared. Finally the medication took affect. My little friend was being taken up to her room. Before she left she told me how she was 93 and she’s never been sick in her life, so why now. I explained that she’s level 93 and she’s just in for a reboot for her next 93 years. She seemed to enjoy that.
The next person brought into this tiny little room with me was an older gentleman. At that time my anxiety started. By this point I was no longer vomiting but I was having an anxiety attack. I was offered Ativan which gave me my only real relief of the evening. I was told I would be taken to an area to be observed. Basically this area was the ￼hospital’s mental ward. Then I arrived at the green mile, my name for the green section of the hospital.￼ I saw no psych doctor. I did speak with a psych nurse. Of course they asked me why I was there and then asked if I felt suicidal at that moment. I explained I feel suicidal pretty much every moment because of my situation,￼￼ but at that exact moment in time, no. Then they asked if I felt suicidal at that moment in time how would I do it. I basically said, umm I am in the hospital now so I’ll probably grab a syringe and poke my eye out. I don’t know. ￼￼
During this time other patients are coming in. Homeless patients saying they were suicidal and/or could possibly hurt someone. I know they were homeless because people were “talking”. One person was discharged and was very upset because I guess he had nowhere to go. He then showed back up because he went and got readmitted. Seriously. Pretty smart as he/they really know how to work the system.￼￼ It was just a very surreal eye-opening experience for me. As for me, at 3:51 AM I was told I was being sent home because there was no real risk with me. I can’t even begin to tell you the look on my face but I’m sure you probably know.￼ 😳
You see I’m not on Medi-Cal through my disability. I use Independence Blue Cross through my husband’s work. They don’t pay ￼so hospitals don’t want me.￼ Read that again, because that’s exactly it. Now if I had been a wealthy person with a good insurance, I would’ve been put on hold. If I’d had been homeless person or someone at poverty level ￼on government insurance I would’ve been put on hold. But I’m a nobody with crappy private insurance so I was kicked to the curb. At 5:42 AM the ambulance arrived to take me back home. They were trying to figure out who is going to pay for it. I explained to just get the ambulance that I would have to deal with my insurance company after the fact. You see there’s no way for people like me to get transport to and from hospitals with Independence Blue Cross.￼￼ and, they are “out of state” so it’s at an out of network rate. So I have to appeal every single time for an in network rate￼. This is NOT what should be happening in the United States of America with private insurance or any insurance! ￼￼
So now, I am home. The only thing that was accomplished was I found out I have an awful bladder infection. I already knew that, bladder stones. Duh!! They gave me no mental health care help. I had to ask for mental health care resources. I got two pieces of paper with some phone numbers. ￼ I tried to kill myself and that was the help I got. Going through the two days of hell vomiting continuously woke me up. Does that mean I will never try to hurt myself again? I don’t know. But now it’s no longer a secret. Now it’s no longer the elephant in the room. Now I can call out for help because those that love me know what I’m going through. ￼￼
I have a video call with my neurologist on Tuesday. I will be making video call appointments with my other doctors today for next week. I’m not going to be complacent anymore and allow this kind of treatment. I’m going to fight for my life and my health and my family. I’m afraid every day. I have feelings of ending my life every day. But now, after this time, I believe I will choose life every time. Can I say that with 100% certainty? No, of course not. But I will do my best to always choose life.
Have courage and be kind.￼￼￼
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.￼￼￼￼
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 willingly￼willingly 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.￼￼
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…￼￼￼￼
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.￼￼￼